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Stage IV..Roll Call for the Undead Please

Forums Caregiver Community Stage IV..Roll Call for the Undead Please

  • Post
    Charlie S
    Participant

      Been a lot of dying going on around here due to melanoma  of late, but there is also a lot of living going on as well.

      For those of you that don't know me, please do not think I am being cavalier about people dying from melanoma.  My girlfriend died in my arms as a result of melanoma(who I met from here by the way).  I have been Stage IV melanoma since 1996 and was Stage III 9 years before that and am now in my 8th recurrence as I am in the middle of my 23rd year since diagnosis with an unknown primary.

      Been a lot of dying going on around here due to melanoma  of late, but there is also a lot of living going on as well.

      For those of you that don't know me, please do not think I am being cavalier about people dying from melanoma.  My girlfriend died in my arms as a result of melanoma(who I met from here by the way).  I have been Stage IV melanoma since 1996 and was Stage III 9 years before that and am now in my 8th recurrence as I am in the middle of my 23rd year since diagnosis with an unknown primary.

        Many people from here, both dead and alive I have met physically over 10 years  of posting here when it was MPIP and more than once I wish it was me that died and not them.  They fought hard, did the stinking surgeries, did the stinking treatments, did the stinking clinical trials and suffered and fought with silent screams as they awaited scan results and fought hard with many by their side

      .  Even today, those caregivers and families continue the fight against melanoma in the honor of those they lost on the cancer battlefield with events, fundraisers, quilts, campaigns and are standing on the doorsteps of government to build on their legacy.

      Every one of them bitch slapped melanoma, drug it down the glistening hallways of clinics, radioology departments,  hospitals, and with broken bottlles jabbing at melanoma with real anger and rage in an effort to defeat it drug it to the gutter and gave it their all.

      So, to those we have lost and their families and caregivers, I salute you.

      However, to paraphrase my supercalifragilisticexpealidocious super melanoma buddy Amy Busby,,,,,,,,,,,,,,,,,not today.

      So I would ask that all of you Stage Fouries chime in, declare yourself undead irrespective of the odds and say "not today"

      Sick, lame and lazy, speak up Stage IV people.  One of our only many jobs is to show others that in spite of the odds and statistics, people DO live and survive melanoma.

      Call me undead.  Speak up please Stage IV people!

       

      Charlie S

       

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    • Replies
        washoegal
        Participant

          Yahoo Charlie …way to tell it.  Not stage 4 but love your attitude. 

          Mary

          Stage 3

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          washoegal
          Participant

            Yahoo Charlie …way to tell it.  Not stage 4 but love your attitude. 

            Mary

            Stage 3

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            Lori C
            Participant

              "Being Irish, he had an abiding sense of tragedy, which sustained him through temporary periods of joy."

              One of my favorite quotes ; )  Yes, there are a lot of losses but hell, we are all terminal cases, as Garp said.  People DO survive this disease and  don't ANYof you give up.  Will never did, and got upset when anyone suggested he should.  It feels bleak at times, especially when the toll of melanoma get high around here.  I took a big emotional hit when Sharon in Reno entered hospice (anyone hear from her?).  

              Live, laugh, hope, and hang on – better days may be coming.
               

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              Lori C
              Participant

                "Being Irish, he had an abiding sense of tragedy, which sustained him through temporary periods of joy."

                One of my favorite quotes ; )  Yes, there are a lot of losses but hell, we are all terminal cases, as Garp said.  People DO survive this disease and  don't ANYof you give up.  Will never did, and got upset when anyone suggested he should.  It feels bleak at times, especially when the toll of melanoma get high around here.  I took a big emotional hit when Sharon in Reno entered hospice (anyone hear from her?).  

                Live, laugh, hope, and hang on – better days may be coming.
                 

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                vickirs
                Participant

                  Way to say it Charlie.  I fight this damn thing everyday. But I live my life. Love my husband and Love my kids like never before.  Have had 1 major surgery, and 2 other hospital stays.  I now poop out of my stomach but I am still here and fighting.  Starting IPI in a week

                  Life is still good.

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                  vickirs
                  Participant

                    Way to say it Charlie.  I fight this damn thing everyday. But I live my life. Love my husband and Love my kids like never before.  Have had 1 major surgery, and 2 other hospital stays.  I now poop out of my stomach but I am still here and fighting.  Starting IPI in a week

                    Life is still good.

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                    Jerry from Cape Cod
                    Participant

                      Thank you for reminding us what we are all about.

                      Stage IV and Undead.

                      Jerry from Cape Cod

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                      Jerry from Cape Cod
                      Participant

                        Thank you for reminding us what we are all about.

                        Stage IV and Undead.

                        Jerry from Cape Cod

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                        glewis923
                        Participant

                          I officially joined Club 4 a few months back after some of my numerous lung spots got over 1 cm and thus became "….clear evidence of metastatic progressive deseise"  or sumthin' to that effect…….

                          I AM the Walking UN-Dead !  

                          Saluting ALL reluctant recruits of Club Mel. !!   Reporting to duty , Sir !

                           

                          Pvt. 4th Class  Grady "Shady" Lewis, 

                          3rd Class April 2009- August 2010

                          Served 11 mths.in I-fearon, now active on frontline defense of Avistan, Taxol, carboplantin.

                          If need be, will ship out on secret mission "quest for the Trial".

                          God save the Queen, and please pass the grits.

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                          glewis923
                          Participant

                            I officially joined Club 4 a few months back after some of my numerous lung spots got over 1 cm and thus became "….clear evidence of metastatic progressive deseise"  or sumthin' to that effect…….

                            I AM the Walking UN-Dead !  

                            Saluting ALL reluctant recruits of Club Mel. !!   Reporting to duty , Sir !

                             

                            Pvt. 4th Class  Grady "Shady" Lewis, 

                            3rd Class April 2009- August 2010

                            Served 11 mths.in I-fearon, now active on frontline defense of Avistan, Taxol, carboplantin.

                            If need be, will ship out on secret mission "quest for the Trial".

                            God save the Queen, and please pass the grits.

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                            MaryD
                            Participant

                              Me too  – Stage IV and blessed to say undead!  DX in 2001, 5 recurrences all together including one lung met which got me to Stage IV in 2007.   I have been incredibly fortunate to be living with a more "indolent" (as the docs call it ) and manageable version of this disease.

                              That I will NEVER take that for granted is an understatement ..

                              Mary

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                              MaryD
                              Participant

                                Me too  – Stage IV and blessed to say undead!  DX in 2001, 5 recurrences all together including one lung met which got me to Stage IV in 2007.   I have been incredibly fortunate to be living with a more "indolent" (as the docs call it ) and manageable version of this disease.

                                That I will NEVER take that for granted is an understatement ..

                                Mary

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                                ValinMtl
                                Participant

                                  Well said Charlie.  We have had lost some beautiful people recently (as we have in the past).  It was time to give words of encouragement for those struggling with the beast.  Fighting it since 2008, after 3 recurrences, I had the misfortunate of graduating to Stage IV this spring (the only graduation I wished I'd flunked!).  Currently on ipi, I'm living life to the fullest, enjoying my hubby and family, smelling the roses with deep breaths, more so than I ever did pre-mel.

                                  Stage IV and Undead…Val

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                                  ValinMtl
                                  Participant

                                    Well said Charlie.  We have had lost some beautiful people recently (as we have in the past).  It was time to give words of encouragement for those struggling with the beast.  Fighting it since 2008, after 3 recurrences, I had the misfortunate of graduating to Stage IV this spring (the only graduation I wished I'd flunked!).  Currently on ipi, I'm living life to the fullest, enjoying my hubby and family, smelling the roses with deep breaths, more so than I ever did pre-mel.

                                    Stage IV and Undead…Val

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                                    Janis B.
                                    Participant

                                      Well said, loud and clear!  So much inspiration is to be found on this board.  I try to soak up every bit of it and hope one day to pass some of it on to others.  Thank you Charlie S. and everyone else who reminds me to stay positive and enjoy my days of health (Stage IIIC). 

                                      And, by the way, not to sound too whiny, I also get a little tired of the hype the seems to surround other cancers.  Please do not take offense, anyone – my dearest friend has breast cancer, but I've told her that if I get one more prescription from Walgreens with a pink cap I'm going to give it back and demand black!!:)

                                       

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                                      Janis B.
                                      Participant

                                        Well said, loud and clear!  So much inspiration is to be found on this board.  I try to soak up every bit of it and hope one day to pass some of it on to others.  Thank you Charlie S. and everyone else who reminds me to stay positive and enjoy my days of health (Stage IIIC). 

                                        And, by the way, not to sound too whiny, I also get a little tired of the hype the seems to surround other cancers.  Please do not take offense, anyone – my dearest friend has breast cancer, but I've told her that if I get one more prescription from Walgreens with a pink cap I'm going to give it back and demand black!!:)

                                         

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                                          Charlie S
                                          Participant

                                            I hear ya.  I'm all about cancer awareness, but I am soooooooooooooooo tired of pink since I saw, with my own eyes the black melanoma tumor extracted from my body.

                                            ….melanoma is still not a "popular" cancer, which is part of the problem.

                                             

                                            Charlie S

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                                            Charlie S
                                            Participant

                                              I hear ya.  I'm all about cancer awareness, but I am soooooooooooooooo tired of pink since I saw, with my own eyes the black melanoma tumor extracted from my body.

                                              ….melanoma is still not a "popular" cancer, which is part of the problem.

                                               

                                              Charlie S

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                                              Linda/Kentucky
                                              Participant

                                                I totally agree with you about all the "other" cancers.  I posted earlier about it.  Why does melanoma not get the recognition that other's do, especially breast…, LIke you said pink,pink,pink what about black,black,black???? 

                                                 

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                                                Linda/Kentucky
                                                Participant

                                                  I totally agree with you about all the "other" cancers.  I posted earlier about it.  Why does melanoma not get the recognition that other's do, especially breast…, LIke you said pink,pink,pink what about black,black,black???? 

                                                   

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                                                  Bonnie Lea
                                                  Participant

                                                    well I would use both pink and black pill bottle tops, but of course and for always black should be (for us all) the predominate colour but lets face it to the world at large boobs are cuter, than big black ugly things called melanoma.  So since I am boobless, what is more visible to me is my eylidnessless and my booblessness, and still my first words are  "I have melanoma'

                                                    Pink is not a nice colour and tis not nor never has been one of my fav.  Now black is always in fashion,  how come that is, yet we cannot get folks to notice melanoma…. hmmm

                                                     

                                                    (but not stage 4)

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                                                    Bonnie Lea
                                                    Participant

                                                      well I would use both pink and black pill bottle tops, but of course and for always black should be (for us all) the predominate colour but lets face it to the world at large boobs are cuter, than big black ugly things called melanoma.  So since I am boobless, what is more visible to me is my eylidnessless and my booblessness, and still my first words are  "I have melanoma'

                                                      Pink is not a nice colour and tis not nor never has been one of my fav.  Now black is always in fashion,  how come that is, yet we cannot get folks to notice melanoma…. hmmm

                                                       

                                                      (but not stage 4)

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                                                    King
                                                    Participant

                                                      I'm another Stage IV and I've been Stage IV over 5 years now.  Scans are coming up this week…that part never seems to be less stressful.

                                                       

                                                      Stay Strong

                                                      King

                                                       

                                                      Stage III Unknown Primary 3/2004

                                                      Groin dissection 4/2004 NED

                                                      Interferon 5/2004-4/2005

                                                      Liver mets 7/2005

                                                      Liver resection (70% of liver removed) and gall bladder removed 9/05  NED

                                                      Phase II clinical trial of GM-CSF 12/2005-11/2006

                                                      Peri-pancreatic tumor and one subq in hip/butt  2008

                                                      Surgery to remove pancreatic tumor and subq  2008 NED

                                                       

                                                      Hang onto hope and live each day to the fullest!

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                                                      King
                                                      Participant

                                                        I'm another Stage IV and I've been Stage IV over 5 years now.  Scans are coming up this week…that part never seems to be less stressful.

                                                         

                                                        Stay Strong

                                                        King

                                                         

                                                        Stage III Unknown Primary 3/2004

                                                        Groin dissection 4/2004 NED

                                                        Interferon 5/2004-4/2005

                                                        Liver mets 7/2005

                                                        Liver resection (70% of liver removed) and gall bladder removed 9/05  NED

                                                        Phase II clinical trial of GM-CSF 12/2005-11/2006

                                                        Peri-pancreatic tumor and one subq in hip/butt  2008

                                                        Surgery to remove pancreatic tumor and subq  2008 NED

                                                         

                                                        Hang onto hope and live each day to the fullest!

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                                                          Rocco
                                                          Participant
                                                            Clinical Trial ParticipantNED

                                                            Best of luck on those scans!!!  Will be thinking/praying for you!

                                                            -Rocco

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                                                            Rocco
                                                            Participant
                                                              Clinical Trial ParticipantNED

                                                              Best of luck on those scans!!!  Will be thinking/praying for you!

                                                              -Rocco

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                                                            PeterO
                                                            Participant

                                                              Yeah, stage IV here too. Not a great place to be, but it does teach one to live life more acutely. There are worse things that could befall us. I just posted on my blog today a few of the things I've learned from cancer (http://www.theogler.blogspot.com). Our stories need to be told. Be bold. Be brave.

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                                                              PeterO
                                                              Participant

                                                                Yeah, stage IV here too. Not a great place to be, but it does teach one to live life more acutely. There are worse things that could befall us. I just posted on my blog today a few of the things I've learned from cancer (http://www.theogler.blogspot.com). Our stories need to be told. Be bold. Be brave.

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                                                                SuzannefromCA
                                                                Participant

                                                                  Well said Charlie! I am also stage IV did the Biochemo hell for a year and a half. I am 4 years NED. I do look at life differently now. I just celebrated my 50th birthday this summer and I consider every day a gift! At the time of my diagnosis I was given 6 to 9 months if I did not go through treatment and as hellish as it was, I would do it again in a heartbeat!

                                                                  Suzanne

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                                                                  SuzannefromCA
                                                                  Participant

                                                                    Well said Charlie! I am also stage IV did the Biochemo hell for a year and a half. I am 4 years NED. I do look at life differently now. I just celebrated my 50th birthday this summer and I consider every day a gift! At the time of my diagnosis I was given 6 to 9 months if I did not go through treatment and as hellish as it was, I would do it again in a heartbeat!

                                                                    Suzanne

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                                                                    lhaley
                                                                    Participant

                                                                      Undead here!  Original primary in 1979. Many other primaries to follow.  Fast forward to 2006 when I went to stage IV. 5 recurrances but surgically NED- 3 weeks!!!!   Scans in 1 month. 

                                                                      I've also lost too many friends on this board but I'm a better person having met them.  I've also met many survivors of stage IV!! 

                                                                      As I inch closer to 4.5  years since my stage IV diagnosis I've learned to appreciate many things I wouldn't even have noticed before.  I do agree with some of the posts – my mom died of breast cancer but I am getting soooo tired of people thinking it's the only cancer around! 

                                                                      Living life and loving it!

                                                                      Linda

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                                                                      lhaley
                                                                      Participant

                                                                        Undead here!  Original primary in 1979. Many other primaries to follow.  Fast forward to 2006 when I went to stage IV. 5 recurrances but surgically NED- 3 weeks!!!!   Scans in 1 month. 

                                                                        I've also lost too many friends on this board but I'm a better person having met them.  I've also met many survivors of stage IV!! 

                                                                        As I inch closer to 4.5  years since my stage IV diagnosis I've learned to appreciate many things I wouldn't even have noticed before.  I do agree with some of the posts – my mom died of breast cancer but I am getting soooo tired of people thinking it's the only cancer around! 

                                                                        Living life and loving it!

                                                                        Linda

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                                                                        Wife of Carl
                                                                        Participant

                                                                          My husband joined the stage 4 club last December.  He has melanoma and basal cell.   He has had numerous biopsies, 10 surgeries, Interferon, radiation, and IL-2 all without any success.  Finally, we found a MEK clinical study which he started in May.  His scans are showing that the tumors are shrinking…the lung mets are no longer measurable!!   He is able to do almost everything that he wants and he is enjoying each day!!  We feel very blessed at this time.  There is hope.  He continues to fight and life is good!!

                                                                          Pat

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                                                                          Wife of Carl
                                                                          Participant

                                                                            My husband joined the stage 4 club last December.  He has melanoma and basal cell.   He has had numerous biopsies, 10 surgeries, Interferon, radiation, and IL-2 all without any success.  Finally, we found a MEK clinical study which he started in May.  His scans are showing that the tumors are shrinking…the lung mets are no longer measurable!!   He is able to do almost everything that he wants and he is enjoying each day!!  We feel very blessed at this time.  There is hope.  He continues to fight and life is good!!

                                                                            Pat

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                                                                            lovingwifedeb
                                                                            Participant

                                                                              Thank you Charlie for calling out the "guardians" of this discussion board. It is the first time I could actually feel a positive presence happening, reaching out… I wish it could happen more often. The last few months on this board has been depressing but I also understand the black fear and its fingers reaching in places most of us don't want to look to closely.

                                                                              I can't get my husband back on this board to post his thoughts/feelings… he says it's too cold a place. Well, I just want to thank everyone here for posting and witnessing that you are all still "living" life and that you find life is worth it, kind of like "pulling up the boot straps" if you know what I mean.

                                                                              Keep sending your positive messages and keep your sense of humor, this board needs it.

                                                                              Deb

                                                                              lovingwife to Bob, stage 3c

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                                                                              lovingwifedeb
                                                                              Participant

                                                                                Thank you Charlie for calling out the "guardians" of this discussion board. It is the first time I could actually feel a positive presence happening, reaching out… I wish it could happen more often. The last few months on this board has been depressing but I also understand the black fear and its fingers reaching in places most of us don't want to look to closely.

                                                                                I can't get my husband back on this board to post his thoughts/feelings… he says it's too cold a place. Well, I just want to thank everyone here for posting and witnessing that you are all still "living" life and that you find life is worth it, kind of like "pulling up the boot straps" if you know what I mean.

                                                                                Keep sending your positive messages and keep your sense of humor, this board needs it.

                                                                                Deb

                                                                                lovingwife to Bob, stage 3c

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                                                                                JoanR
                                                                                Participant

                                                                                  Well Chales, true to form I wrote a lovely email to you and lost the damn thing !! Thank you for all your inspiration and caring ways. You have made a difference in so many lives, for warriors and caregivers alike. You have been in the unthinkable position of having been both.. Keep up the good fight, stay well, and post often…Cheers, dear friend…Warpie

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                                                                                  JoanR
                                                                                  Participant

                                                                                    Well Chales, true to form I wrote a lovely email to you and lost the damn thing !! Thank you for all your inspiration and caring ways. You have made a difference in so many lives, for warriors and caregivers alike. You have been in the unthinkable position of having been both.. Keep up the good fight, stay well, and post often…Cheers, dear friend…Warpie

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                                                                                    Carmon in NM
                                                                                    Participant

                                                                                      Yay Charlie for saying it so well!

                                                                                      Carmon in New Mexico here, one of the Stage IV Undead – 57, married but no kids other than 6 horses, 3 dogs, 2 cats, 2 goats, numerous freshwater fish, and I still take care of them all and love living in the mountains of northern New Mexico!

                                                                                      Diagnosed 3b in 9/2008 after WLE/SNB for upper left arm primary, followed by left axillary LND 1/2009. I stayed NED until 6/2010 when a metastasis to my brain that hadn't shown up on my regular scan began bleeding into my brain. It took away my NED status and jumped me to Stage 4 without a chance to pass GO! 

                                                                                      I had an emergency craniotomy to relieve the bleed then Gamma Knife Surgery in July to stop the bleeding tumor and also a smaller one found during the high res MRI mapping process.  Follow up scans in September found a new tumor on my right adrenal gland and I started a drug trial combining carbo, taxol and temodar in October.

                                                                                      This tumor could be surgically resected but we decided to see if we can find something that will shrink it first. I am also waiting for dna testing to come back to see if I am c-kit positive. Surgery to remove the adrenal gland is still on the horizon at some point but for now, I call it my 'canary in the coal mine'because it will tell us when we have found something that will work on my particular brand of sneaky melanoma! A new brain MRI done in October showed the big brain tumor that bled had shrunk by 50% after gamma knife and the tiny one is remaining stable and is probably now just scar tissue.

                                                                                      Somehow, I have never felt that this disease will defeat me. It might end up killing me, but it sure isn't ever going to defeat me! The very best to you all, my fellow survivors, as well as the ones who have moved on and most certainly, to all of you caregivers who make it possible for us to keep moving forward in love and hope!

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                                                                                      Carmon in NM
                                                                                      Participant

                                                                                        Yay Charlie for saying it so well!

                                                                                        Carmon in New Mexico here, one of the Stage IV Undead – 57, married but no kids other than 6 horses, 3 dogs, 2 cats, 2 goats, numerous freshwater fish, and I still take care of them all and love living in the mountains of northern New Mexico!

                                                                                        Diagnosed 3b in 9/2008 after WLE/SNB for upper left arm primary, followed by left axillary LND 1/2009. I stayed NED until 6/2010 when a metastasis to my brain that hadn't shown up on my regular scan began bleeding into my brain. It took away my NED status and jumped me to Stage 4 without a chance to pass GO! 

                                                                                        I had an emergency craniotomy to relieve the bleed then Gamma Knife Surgery in July to stop the bleeding tumor and also a smaller one found during the high res MRI mapping process.  Follow up scans in September found a new tumor on my right adrenal gland and I started a drug trial combining carbo, taxol and temodar in October.

                                                                                        This tumor could be surgically resected but we decided to see if we can find something that will shrink it first. I am also waiting for dna testing to come back to see if I am c-kit positive. Surgery to remove the adrenal gland is still on the horizon at some point but for now, I call it my 'canary in the coal mine'because it will tell us when we have found something that will work on my particular brand of sneaky melanoma! A new brain MRI done in October showed the big brain tumor that bled had shrunk by 50% after gamma knife and the tiny one is remaining stable and is probably now just scar tissue.

                                                                                        Somehow, I have never felt that this disease will defeat me. It might end up killing me, but it sure isn't ever going to defeat me! The very best to you all, my fellow survivors, as well as the ones who have moved on and most certainly, to all of you caregivers who make it possible for us to keep moving forward in love and hope!

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                                                                                        Father is stage IV
                                                                                        Participant

                                                                                          My dad has been Stage IV since 2007.  His original diagnosis was in 1998.

                                                                                          He's been NED since 2008, after 6 months of biochemo, followed by 6 months of maintenance IL-2.  He's 67 now and still going strong–not today is right!

                                                                                          Krista

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                                                                                          Father is stage IV
                                                                                          Participant

                                                                                            My dad has been Stage IV since 2007.  His original diagnosis was in 1998.

                                                                                            He's been NED since 2008, after 6 months of biochemo, followed by 6 months of maintenance IL-2.  He's 67 now and still going strong–not today is right!

                                                                                            Krista

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                                                                                            debbieVA
                                                                                            Participant

                                                                                              FREAKIN' UNDEAD IS RIGHT!  

                                                                                              Finding myself on this side of the dirt at this stage of the game is a reward I relish everyday!  I, too, have lost many a friend to this bitch, orphan of a disease.  

                                                                                              I am thrilled to find my post listed along with so many inspirational HEROS and SHE-ROS.  When I was told in 2006, that I had roughly 6-9 months, I NEVER uttered those words to anyone…..I felt if I did, I would give that ugly death sentence LIFE.  I'm here to tell you ….. it isn't a DEATH SENTENCE… Fight and fight hard,,,and no one said you have to fight FAIR either!  

                                                                                              EDUCATE yourself and your families.   DO NOT wait for the phone to ring with and appointment, or a path report, or lab results….DEMAND QUALITY MEDICAL CARE.  I have FIRED more MD's than I currently employ.   If you need a treatment…..GO AFTER IT….Demand it!  Yell long and loud…DEMAND answers, treatments, cures!  At every opportunity OPEN your mouths and make your needs known!  

                                                                                              I know I sound a bit Militant…but make no mistake….I am!  I am running this race to win….not just to merely finish.  

                                                                                              Wishing all my  STAGE 4 Brothers and Sisters….WELLNESS.   Wishing PEACE to all who have lost loved ones….

                                                                                              Love…

                                                                                              Debbie STAGE 4 NED

                                                                                              [email protected]

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                                                                                                Wendi Lynn
                                                                                                Participant

                                                                                                  Amen to that Debbie!  So well said by you and everyone else!  I am Stage 3, but I appreciate the advice from all the Stage 4 Warriors!  You guys ROCK!!!

                                                                                                  Wendi   =)

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                                                                                                  Wendi Lynn
                                                                                                  Participant

                                                                                                    Amen to that Debbie!  So well said by you and everyone else!  I am Stage 3, but I appreciate the advice from all the Stage 4 Warriors!  You guys ROCK!!!

                                                                                                    Wendi   =)

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                                                                                                  debbieVA
                                                                                                  Participant

                                                                                                    FREAKIN' UNDEAD IS RIGHT!  

                                                                                                    Finding myself on this side of the dirt at this stage of the game is a reward I relish everyday!  I, too, have lost many a friend to this bitch, orphan of a disease.  

                                                                                                    I am thrilled to find my post listed along with so many inspirational HEROS and SHE-ROS.  When I was told in 2006, that I had roughly 6-9 months, I NEVER uttered those words to anyone…..I felt if I did, I would give that ugly death sentence LIFE.  I'm here to tell you ….. it isn't a DEATH SENTENCE… Fight and fight hard,,,and no one said you have to fight FAIR either!  

                                                                                                    EDUCATE yourself and your families.   DO NOT wait for the phone to ring with and appointment, or a path report, or lab results….DEMAND QUALITY MEDICAL CARE.  I have FIRED more MD's than I currently employ.   If you need a treatment…..GO AFTER IT….Demand it!  Yell long and loud…DEMAND answers, treatments, cures!  At every opportunity OPEN your mouths and make your needs known!  

                                                                                                    I know I sound a bit Militant…but make no mistake….I am!  I am running this race to win….not just to merely finish.  

                                                                                                    Wishing all my  STAGE 4 Brothers and Sisters….WELLNESS.   Wishing PEACE to all who have lost loved ones….

                                                                                                    Love…

                                                                                                    Debbie STAGE 4 NED

                                                                                                    [email protected]

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                                                                                                    Amy Busby
                                                                                                    Participant

                                                                                                      Thanks for the call to arms my friend!  I'm sitting here in a hotel in San Antonio waiting on my 2nd ipi dose.  My outlook is not necessarily right for everyone.  But for me it released my anxiety & fear to embrace the reality that melanoma will probably kill me, and far sooner than I'd like.  But not today.  Each and every day is a victory.  And I'm gonna fight and scratch for every one.  And day by day those days will stack up and I'll look back at a mountain of days that have made a lifetime.

                                                                                                      I've been here 7 years.  Sometimes it feels like an eternity.  I have met and loved and lost so many friends.  Brave, compassionate, much loved, wonderful people.  I fight on for them.  And for my family.  And for all my friends who are also still fighting & those who care for them.

                                                                                                      I'm now 7 months out from my leptomeningial disease diagnosis & the 2-4 month prognosis it carries.  Well F you, melanoma!

                                                                                                      Stay Strong!

                                                                                                      Stay strong
                                                                                                      You are not lost
                                                                                                      Come on and fix your eyes ahead
                                                                                                      There's a new dawn to light our day, our day
                                                                                                      You've gotta stay strong
                                                                                                      You and I run
                                                                                                      For the prize that lies ahead
                                                                                                      We've come too far to lose our way, our way
                                                                                                       

                                                                                                      Love,

                                                                                                      Amy
                                                                                                       

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                                                                                                        debbieVA
                                                                                                        Participant

                                                                                                          ( ( ( AMY ) ) ) ) …you are running this race to win….eyes forward…focused!  Rock on my Mela-Sista…You are indeed an inspiration to us all!  Stepping out of the comfort zone…Pushing the envelope always forward!  For all who read the MPIP……This is a voice of truth….tells the story….personal victory.  Every day with her children and husband is a good day.  AND she still continues to praise God.  

                                                                                                          Love you, God Bless…

                                                                                                          Debbie

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                                                                                                          debbieVA
                                                                                                          Participant

                                                                                                            ( ( ( AMY ) ) ) ) …you are running this race to win….eyes forward…focused!  Rock on my Mela-Sista…You are indeed an inspiration to us all!  Stepping out of the comfort zone…Pushing the envelope always forward!  For all who read the MPIP……This is a voice of truth….tells the story….personal victory.  Every day with her children and husband is a good day.  AND she still continues to praise God.  

                                                                                                            Love you, God Bless…

                                                                                                            Debbie

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                                                                                                            JackieDoss
                                                                                                            Participant

                                                                                                              Praise God for the "mountain of days" that you leave your imprint on the world, Amy! Love you! – Jackie 

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                                                                                                              JackieDoss
                                                                                                              Participant

                                                                                                                Praise God for the "mountain of days" that you leave your imprint on the world, Amy! Love you! – Jackie 

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                                                                                                              Amy Busby
                                                                                                              Participant

                                                                                                                Thanks for the call to arms my friend!  I'm sitting here in a hotel in San Antonio waiting on my 2nd ipi dose.  My outlook is not necessarily right for everyone.  But for me it released my anxiety & fear to embrace the reality that melanoma will probably kill me, and far sooner than I'd like.  But not today.  Each and every day is a victory.  And I'm gonna fight and scratch for every one.  And day by day those days will stack up and I'll look back at a mountain of days that have made a lifetime.

                                                                                                                I've been here 7 years.  Sometimes it feels like an eternity.  I have met and loved and lost so many friends.  Brave, compassionate, much loved, wonderful people.  I fight on for them.  And for my family.  And for all my friends who are also still fighting & those who care for them.

                                                                                                                I'm now 7 months out from my leptomeningial disease diagnosis & the 2-4 month prognosis it carries.  Well F you, melanoma!

                                                                                                                Stay Strong!

                                                                                                                Stay strong
                                                                                                                You are not lost
                                                                                                                Come on and fix your eyes ahead
                                                                                                                There's a new dawn to light our day, our day
                                                                                                                You've gotta stay strong
                                                                                                                You and I run
                                                                                                                For the prize that lies ahead
                                                                                                                We've come too far to lose our way, our way
                                                                                                                 

                                                                                                                Love,

                                                                                                                Amy
                                                                                                                 

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                                                                                                                LBN
                                                                                                                Participant

                                                                                                                  Stage IV and not dead. Been through lots of @#%@ but to busy enjoying my 3 children and husband to let it get me down. Thank you for reminding us to live life to the fullest!

                                                                                                                  Laurie

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                                                                                                                  LBN
                                                                                                                  Participant

                                                                                                                    Stage IV and not dead. Been through lots of @#%@ but to busy enjoying my 3 children and husband to let it get me down. Thank you for reminding us to live life to the fullest!

                                                                                                                    Laurie

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                                                                                                                    JackieDoss
                                                                                                                    Participant

                                                                                                                      Love you, Charlie!!! And I am SOOOOO NOT DEAD!!!

                                                                                                                      – Jackie Doss, Stage IV (NED for 4 years… and not expecting it to come back!)

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                                                                                                                      JackieDoss
                                                                                                                      Participant

                                                                                                                        Love you, Charlie!!! And I am SOOOOO NOT DEAD!!!

                                                                                                                        – Jackie Doss, Stage IV (NED for 4 years… and not expecting it to come back!)

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                                                                                                                        KatyWI
                                                                                                                        Participant

                                                                                                                          I AM UNDEAD!

                                                                                                                          Not today, and probably not tomorrow either. 

                                                                                                                          KatyWI

                                                                                                                          DX stage III 2001; stage IV recurrence 2009; currently have subQs and brain mets; hope to be starting ipi in two weeks.

                                                                                                                           

                                                                                                                          Thanks Charlie, I think we all needed this today.

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                                                                                                                          KatyWI
                                                                                                                          Participant

                                                                                                                            I AM UNDEAD!

                                                                                                                            Not today, and probably not tomorrow either. 

                                                                                                                            KatyWI

                                                                                                                            DX stage III 2001; stage IV recurrence 2009; currently have subQs and brain mets; hope to be starting ipi in two weeks.

                                                                                                                             

                                                                                                                            Thanks Charlie, I think we all needed this today.

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                                                                                                                            Jim in Denver
                                                                                                                            Participant

                                                                                                                              Hi Charlie,

                                                                                                                              Our friend Jerry Ellis told me about you, and you two both certsainly have that fighting spirit that help inspire others to keep fighting.  I am still a newbie here ans appreciate what you and other MPIPers have done to help others over the years.  You and many others make this community a special place, and have helped me in many ways since my diagnosis, for which I am eternally grateful. 

                                                                                                                              I am Stage IV, diagnosed 3/15/10, unknown primary, lung mets, began Ipilimumab+Temador Trial at MD Anderson on 8/3/10, scans on 10/26 showed treatment response – stable disease with some tumor reduction, continuing treatment.  There is hope for melanoma patients with treatments that can slow, stop, and even reverse this damn disease.

                                                                                                                              Stay positive, live each day to the fullest, and get the best treatment you can find. 

                                                                                                                              Best Wishes,

                                                                                                                              Jim

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                                                                                                                              Jim in Denver
                                                                                                                              Participant

                                                                                                                                Hi Charlie,

                                                                                                                                Our friend Jerry Ellis told me about you, and you two both certsainly have that fighting spirit that help inspire others to keep fighting.  I am still a newbie here ans appreciate what you and other MPIPers have done to help others over the years.  You and many others make this community a special place, and have helped me in many ways since my diagnosis, for which I am eternally grateful. 

                                                                                                                                I am Stage IV, diagnosed 3/15/10, unknown primary, lung mets, began Ipilimumab+Temador Trial at MD Anderson on 8/3/10, scans on 10/26 showed treatment response – stable disease with some tumor reduction, continuing treatment.  There is hope for melanoma patients with treatments that can slow, stop, and even reverse this damn disease.

                                                                                                                                Stay positive, live each day to the fullest, and get the best treatment you can find. 

                                                                                                                                Best Wishes,

                                                                                                                                Jim

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                                                                                                                                Rocco
                                                                                                                                Participant
                                                                                                                                  Clinical Trial ParticipantNED

                                                                                                                                  Happy to say 'Undead' since original diagnosis of unknown primary, Stage IV on Aug. 11, 2005!  Last treatment was final dose of ipi on Feb 4, 2009……clean scans since!  Next scans in mid-December.   Since that dreadful day in 2005 I've seen dear friends have their first children, watch a brother walk down the aisle, crossed a few things off my bucket list (just saw the Grand Canyon!) and married the love of my life(July 2010)  who has been with me through all of this.  Still working full time and praying daily.  Thanks to all who have contributed to the mpip bulletin board over the years.  Truly have been emotional lifesavers for me since the dx…..hang in there everybody!

                                                                                                                                  Rocco – Stage IV

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                                                                                                                                  Rocco
                                                                                                                                  Participant
                                                                                                                                    Clinical Trial ParticipantNED

                                                                                                                                    Happy to say 'Undead' since original diagnosis of unknown primary, Stage IV on Aug. 11, 2005!  Last treatment was final dose of ipi on Feb 4, 2009……clean scans since!  Next scans in mid-December.   Since that dreadful day in 2005 I've seen dear friends have their first children, watch a brother walk down the aisle, crossed a few things off my bucket list (just saw the Grand Canyon!) and married the love of my life(July 2010)  who has been with me through all of this.  Still working full time and praying daily.  Thanks to all who have contributed to the mpip bulletin board over the years.  Truly have been emotional lifesavers for me since the dx…..hang in there everybody!

                                                                                                                                    Rocco – Stage IV

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                                                                                                                                    Kim K
                                                                                                                                    Participant

                                                                                                                                      Still here kicking A$$.  Currently NEDStage IV for at least 1 1/2 years, probably more :P.  In the battle starting as stage IIA since 7/11/02.  I too miss the friends I have lost.  That being said, they will live on forever in our memories.  It made a difference that they were here with us on Earth for the time they were given.

                                                                                                                                      VATS – 2/2/10

                                                                                                                                      IL-2 – 5/10

                                                                                                                                      NED – 6/10

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                                                                                                                                      Kim K
                                                                                                                                      Participant

                                                                                                                                        Still here kicking A$$.  Currently NEDStage IV for at least 1 1/2 years, probably more :P.  In the battle starting as stage IIA since 7/11/02.  I too miss the friends I have lost.  That being said, they will live on forever in our memories.  It made a difference that they were here with us on Earth for the time they were given.

                                                                                                                                        VATS – 2/2/10

                                                                                                                                        IL-2 – 5/10

                                                                                                                                        NED – 6/10

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                                                                                                                                          StanN
                                                                                                                                          Participant

                                                                                                                                            Hey Kim  good to see your update…. and your N.E D status…

                                                                                                                                                [ smiles to you]..take care

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                                                                                                                                            StanN
                                                                                                                                            Participant

                                                                                                                                              Hey Kim  good to see your update…. and your N.E D status…

                                                                                                                                                  [ smiles to you]..take care

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                                                                                                                                            Kim K
                                                                                                                                            Participant

                                                                                                                                              Still here kicking A$$.  Currently NEDStage IV for at least 1 1/2 years, probably more :P.  In the battle starting as stage IIA since 7/11/02.  I too miss the friends I have lost.  That being said, they will live on forever in our memories.  It made a difference that they were here with us on Earth for the time they were given.

                                                                                                                                              VATS – 2/2/10

                                                                                                                                              IL-2 – 5/10

                                                                                                                                              NED – 6/10

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                                                                                                                                              Kim K
                                                                                                                                              Participant

                                                                                                                                                Still here kicking A$$.  Currently NEDStage IV for at least 1 1/2 years, probably more :P.  In the battle starting as stage IIA since 7/11/02.  I too miss the friends I have lost.  That being said, they will live on forever in our memories.  It made a difference that they were here with us on Earth for the time they were given.

                                                                                                                                                VATS – 2/2/10

                                                                                                                                                IL-2 – 5/10

                                                                                                                                                NED – 6/10

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                                                                                                                                                Sharyn
                                                                                                                                                Participant

                                                                                                                                                  Well put, Charlie!

                                                                                                                                                  When I was diagnosed in 2006 at Stage IIIB, I was told I had 3 mos to 3 yrs. In 2008, I was told I had a 20% chance of being alive in 2 years. This year, at Stage IV with mets to uterus, breast, lung, back and brain, a doctor told me I have a very aggressive disease, and that statistically I shouldn't still be alive. He couldn't figure out why I was still doing so well, but told me whatever it is I'm doing, keep it up. If only I knew what that was! All I can say is that knowledge is empowering, patients must play an active role in treatment decisions, and above all, stay positive and never give up hope.

                                                                                                                                                  Hugs

                                                                                                                                                  Sharyn, Stage IV

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                                                                                                                                                  Sharyn
                                                                                                                                                  Participant

                                                                                                                                                    Well put, Charlie!

                                                                                                                                                    When I was diagnosed in 2006 at Stage IIIB, I was told I had 3 mos to 3 yrs. In 2008, I was told I had a 20% chance of being alive in 2 years. This year, at Stage IV with mets to uterus, breast, lung, back and brain, a doctor told me I have a very aggressive disease, and that statistically I shouldn't still be alive. He couldn't figure out why I was still doing so well, but told me whatever it is I'm doing, keep it up. If only I knew what that was! All I can say is that knowledge is empowering, patients must play an active role in treatment decisions, and above all, stay positive and never give up hope.

                                                                                                                                                    Hugs

                                                                                                                                                    Sharyn, Stage IV

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                                                                                                                                                    Suzan AB
                                                                                                                                                    Participant

                                                                                                                                                      Hello Commards…LOL,

                                                                                                                                                      It has been along time since I last posted.  I have been busy working to pay my medical bills…gotta love it.  Paid into this system for over 30 years and now…anyways off topic.

                                                                                                                                                      Received some sombering news today.  My PET showed signs of mets (?) correct term? or tumors…in my right lung.  My local doc is talking to my oco doc in SF so we can complete another test before Dec. 1 when my new dedictable goes up to $10,000.00.

                                                                                                                                                      Any suggestions?  Please post.

                                                                                                                                                      Stage IV Warrior on the War Path!

                                                                                                                                                      Biggest hugs to all!!

                                                                                                                                                      Suzan AB

                                                                                                                                                      Braf positive…

                                                                                                                                                       

                                                                                                                                                      P.S.  Reno Sharon are you still around?

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                                                                                                                                                      Suzan AB
                                                                                                                                                      Participant

                                                                                                                                                        Hello Commards…LOL,

                                                                                                                                                        It has been along time since I last posted.  I have been busy working to pay my medical bills…gotta love it.  Paid into this system for over 30 years and now…anyways off topic.

                                                                                                                                                        Received some sombering news today.  My PET showed signs of mets (?) correct term? or tumors…in my right lung.  My local doc is talking to my oco doc in SF so we can complete another test before Dec. 1 when my new dedictable goes up to $10,000.00.

                                                                                                                                                        Any suggestions?  Please post.

                                                                                                                                                        Stage IV Warrior on the War Path!

                                                                                                                                                        Biggest hugs to all!!

                                                                                                                                                        Suzan AB

                                                                                                                                                        Braf positive…

                                                                                                                                                         

                                                                                                                                                        P.S.  Reno Sharon are you still around?

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                                                                                                                                                          Jim in Denver
                                                                                                                                                          Participant

                                                                                                                                                            Sharon last posted on 9/10/10.  Please use the MRF Search box on the upper right to read it.

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                                                                                                                                                            Jim in Denver
                                                                                                                                                            Participant

                                                                                                                                                              Sharon last posted on 9/10/10.  Please use the MRF Search box on the upper right to read it.

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                                                                                                                                                            kel
                                                                                                                                                            Participant

                                                                                                                                                              Happily undead, 7 time survivor……call me UNDEAD!!

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                                                                                                                                                              kel
                                                                                                                                                              Participant

                                                                                                                                                                Happily undead, 7 time survivor……call me UNDEAD!!

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                                                                                                                                                                dian in spokane
                                                                                                                                                                Participant

                                                                                                                                                                  Good to see you Charlie.

                                                                                                                                                                  I'll chime in too. Not so much 'undead' and 'livin' it up' <g> I've been stage IV now (on a technicality!) for 2 yrs. Stage III for 5 yrs before that, and stage I for 20 yrs before that. And I am still telling melanoma to kiss my big white butt.

                                                                                                                                                                   

                                                                                                                                                                  dian

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                                                                                                                                                                  dian in spokane
                                                                                                                                                                  Participant

                                                                                                                                                                    Good to see you Charlie.

                                                                                                                                                                    I'll chime in too. Not so much 'undead' and 'livin' it up' <g> I've been stage IV now (on a technicality!) for 2 yrs. Stage III for 5 yrs before that, and stage I for 20 yrs before that. And I am still telling melanoma to kiss my big white butt.

                                                                                                                                                                     

                                                                                                                                                                    dian

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                                                                                                                                                                    paul
                                                                                                                                                                    Participant

                                                                                                                                                                      Stage IIIa 2003, IIIC 2008, Lung met removed 12/09. Still ticking. Thanks to all on this board who offer encouragement and advice to others.

                                                                                                                                                                      Paul

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                                                                                                                                                                      paul
                                                                                                                                                                      Participant

                                                                                                                                                                        Stage IIIa 2003, IIIC 2008, Lung met removed 12/09. Still ticking. Thanks to all on this board who offer encouragement and advice to others.

                                                                                                                                                                        Paul

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                                                                                                                                                                        Alicia15
                                                                                                                                                                        Participant

                                                                                                                                                                          Good idea Charlie! I don't post very often but I read the board frequently.

                                                                                                                                                                          I was diagnosed with the beast 20 years ago. I am still here alive and well, living my life, working full time, etc.

                                                                                                                                                                          Stage IV since 2003 – I have been stable/NED for 5 years.

                                                                                                                                                                          Cheers!

                                                                                                                                                                          Alicia

                                                                                                                                                                           

                                                                                                                                                                           

                                                                                                                                                                           

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                                                                                                                                                                          Alicia15
                                                                                                                                                                          Participant

                                                                                                                                                                            Good idea Charlie! I don't post very often but I read the board frequently.

                                                                                                                                                                            I was diagnosed with the beast 20 years ago. I am still here alive and well, living my life, working full time, etc.

                                                                                                                                                                            Stage IV since 2003 – I have been stable/NED for 5 years.

                                                                                                                                                                            Cheers!

                                                                                                                                                                            Alicia

                                                                                                                                                                             

                                                                                                                                                                             

                                                                                                                                                                             

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                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                            Participant

                                                                                                                                                                              What can I say!  Love that fighting man!

                                                                                                                                                                                 After a few months of being semi-stable (back in the first half of 2007).  I was approaching the 6 months mark and was wodering how long can one stay here in that status given our short term expected survival.  i came on the MPIP board and asked what could be expected regarding the future, especially if the tumors were not disappearing.  Some military veteran named Charlie chimed in and said he couldn't really say, but that he could say that after 11 years as stage IV and not being NED, he was't figuring on checking out any time soon. 

                                                                                                                                                                                 Charkie, thank you for your many words of wisdom and attitude to us all over the years.

                                                                                                                                                                                 Inspite of your MS and my family being told I was gone, It is still great to be one of the UNDEAD, still using these organs.  I don't even know what to say about that wonderful gal named Amy.  Love you too, Gal.  Love many others I have met and/or contacated here over the past few years.

                                                                                                                                                                              JerryfromFauq

                                                                                                                                                                               

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                                                                                                                                                                              JerryfromFauq
                                                                                                                                                                              Participant

                                                                                                                                                                                What can I say!  Love that fighting man!

                                                                                                                                                                                   After a few months of being semi-stable (back in the first half of 2007).  I was approaching the 6 months mark and was wodering how long can one stay here in that status given our short term expected survival.  i came on the MPIP board and asked what could be expected regarding the future, especially if the tumors were not disappearing.  Some military veteran named Charlie chimed in and said he couldn't really say, but that he could say that after 11 years as stage IV and not being NED, he was't figuring on checking out any time soon. 

                                                                                                                                                                                   Charkie, thank you for your many words of wisdom and attitude to us all over the years.

                                                                                                                                                                                   Inspite of your MS and my family being told I was gone, It is still great to be one of the UNDEAD, still using these organs.  I don't even know what to say about that wonderful gal named Amy.  Love you too, Gal.  Love many others I have met and/or contacated here over the past few years.

                                                                                                                                                                                JerryfromFauq

                                                                                                                                                                                 

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                                                                                                                                                                                KRob
                                                                                                                                                                                Participant

                                                                                                                                                                                  As usual, I'm late…but I'm still here and loving life! Melanoma has been part of my life since 1989, stage IV since 2005, currently NED!

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                                                                                                                                                                                  KRob
                                                                                                                                                                                  Participant

                                                                                                                                                                                    As usual, I'm late…but I'm still here and loving life! Melanoma has been part of my life since 1989, stage IV since 2005, currently NED!

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                                                                                                                                                                                    miker
                                                                                                                                                                                    Participant

                                                                                                                                                                                      My wife is Stage IV and has been for several years, numerous surgeries, Ipi, and other drugs, but now stable disease while in a clinical trial with a MEK inhibitor. We live in 12 week bites between the scans and enjoy life, Miker

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                                                                                                                                                                                      miker
                                                                                                                                                                                      Participant

                                                                                                                                                                                        My wife is Stage IV and has been for several years, numerous surgeries, Ipi, and other drugs, but now stable disease while in a clinical trial with a MEK inhibitor. We live in 12 week bites between the scans and enjoy life, Miker

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                                                                                                                                                                                        miker
                                                                                                                                                                                        Participant

                                                                                                                                                                                          My wife is Stage IV and has been for several years, numerous surgeries, Ipi, and other drugs, but now stable disease while in a clinical trial with a MEK inhibitor. We live in 12 week bites between the scans and enjoy life, Miker

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                                                                                                                                                                                          miker
                                                                                                                                                                                          Participant

                                                                                                                                                                                            My wife is Stage IV and has been for several years, numerous surgeries, Ipi, and other drugs, but now stable disease while in a clinical trial with a MEK inhibitor. We live in 12 week bites between the scans and enjoy life, Miker

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                                                                                                                                                                                            LynnLuc
                                                                                                                                                                                            Participant

                                                                                                                                                                                              Diagnosed Stage 4 Melanoma in May 09…Mayo gave me 6-9 months…NED since March 26, 2010…ain't even close to being dead!

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                                                                                                                                                                                              LynnLuc
                                                                                                                                                                                              Participant

                                                                                                                                                                                                Diagnosed Stage 4 Melanoma in May 09…Mayo gave me 6-9 months…NED since March 26, 2010…ain't even close to being dead!

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                                                                                                                                                                                                Eileen L
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  Hey there Charlie. Haven't been on the board in many weeks and decided to log in tonight. What a treat to find your post! As always, you tell it like it is with an exuberance for life that is awesome.

                                                                                                                                                                                                  Yes, here I am over three years since my Stage IV diagnosis. I live every day to its fullest, enjoying the people I love and doing the things that bring joy into my life.  Life continues to be a blast and I intend to keep on going and going and going, just like the little energizer bunny!

                                                                                                                                                                                                  Eileen L

                                                                                                                                                                                                  Stage IV

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                                                                                                                                                                                                  Eileen L
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                    Hey there Charlie. Haven't been on the board in many weeks and decided to log in tonight. What a treat to find your post! As always, you tell it like it is with an exuberance for life that is awesome.

                                                                                                                                                                                                    Yes, here I am over three years since my Stage IV diagnosis. I live every day to its fullest, enjoying the people I love and doing the things that bring joy into my life.  Life continues to be a blast and I intend to keep on going and going and going, just like the little energizer bunny!

                                                                                                                                                                                                    Eileen L

                                                                                                                                                                                                    Stage IV

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                                                                                                                                                                                                    kel
                                                                                                                                                                                                    Participant

                                                                                                                                                                                                      Hey Charlie,  Kelly here.  The official scorecard:  Me: 28 years living with the Beast; Melanoma: 7 recurrences.   smiley

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                                                                                                                                                                                                      kel
                                                                                                                                                                                                      Participant

                                                                                                                                                                                                        Hey Charlie,  Kelly here.  The official scorecard:  Me: 28 years living with the Beast; Melanoma: 7 recurrences.   smiley

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                                                                                                                                                                                                        NicOz
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          Nope. Not dead. I'm just a very busy girl :P

                                                                                                                                                                                                          Original diagnosis at stage 4 with unknown primary 2y 8mo ago via brain mets. 20+ have taken up residence in that time, but am still most definitely here are living independently. 7 craniotomies and 5 SRS later, 2 courses of failed chemo, and had my last SRS 2 days ago.

                                                                                                                                                                                                          Not only have I seen my little girl start school (which most thought highly unlikely), but in 2 weeks I'll be seeing her finish her first year :) Never been NED, and still have 5 in there at the moment, but I'm chugging along just fine and mostly think of them as an inconvenience. Melanoma is something I have, it doesn't define me- I'm not a 'warrior' or a 'survivor'… I'm a mother, a daughter, a sister and a friend who still thoroughly enjoys her life (THOSE are the things I consider my roles/job)

                                                                                                                                                                                                          Mel may have me by the brain cells, but  I'm retaliating by grabbing it by the gonads… and anyway, I tend to work best under pressure :P

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                                                                                                                                                                                                          NicOz
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            Nope. Not dead. I'm just a very busy girl :P

                                                                                                                                                                                                            Original diagnosis at stage 4 with unknown primary 2y 8mo ago via brain mets. 20+ have taken up residence in that time, but am still most definitely here are living independently. 7 craniotomies and 5 SRS later, 2 courses of failed chemo, and had my last SRS 2 days ago.

                                                                                                                                                                                                            Not only have I seen my little girl start school (which most thought highly unlikely), but in 2 weeks I'll be seeing her finish her first year :) Never been NED, and still have 5 in there at the moment, but I'm chugging along just fine and mostly think of them as an inconvenience. Melanoma is something I have, it doesn't define me- I'm not a 'warrior' or a 'survivor'… I'm a mother, a daughter, a sister and a friend who still thoroughly enjoys her life (THOSE are the things I consider my roles/job)

                                                                                                                                                                                                            Mel may have me by the brain cells, but  I'm retaliating by grabbing it by the gonads… and anyway, I tend to work best under pressure :P

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                                                                                                                                                                                                            NancyGM
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              I have been lucky enough to be NED( at stage IV) for 3 years now…. I did 10 rounds of Temodar in 2007. I don't know why I have done well when others have not. My e-mail pen-pal, Janet (from the UK) is gone and we both progressed to stage IV  at the same time. I will really miss her.

                                                                                                                                                                                                              Though I have taken a long break from here, I am back and I want to offer some hope. I am aware always how things could turn on me at any time…but the funny thing is the limbo that I live in is my triumph…Like Sisyphus condemned to rolling a boulder up a hill only to have it roll back down and have to roll it back up- for eternity- I know that the walk back down the hill is all mine and this damn disease can not steal those sparkling moments when I am busy "living to the point of tears".

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                                                                                                                                                                                                              NancyGM
                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                I have been lucky enough to be NED( at stage IV) for 3 years now…. I did 10 rounds of Temodar in 2007. I don't know why I have done well when others have not. My e-mail pen-pal, Janet (from the UK) is gone and we both progressed to stage IV  at the same time. I will really miss her.

                                                                                                                                                                                                                Though I have taken a long break from here, I am back and I want to offer some hope. I am aware always how things could turn on me at any time…but the funny thing is the limbo that I live in is my triumph…Like Sisyphus condemned to rolling a boulder up a hill only to have it roll back down and have to roll it back up- for eternity- I know that the walk back down the hill is all mine and this damn disease can not steal those sparkling moments when I am busy "living to the point of tears".

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                                                                                                                                                                                                                ed_CT
                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                  Here I am still typing after over 5 years since going stage IV.   I did a Nexavar/Temodar trial in 2005.   It worked well for me – unfortunately not the silver bullet for most others.  However – it does point out that there is hope and keep looking for the latest clinical trials.

                                                                                                                                                                                                                   

                                                                                                                                                                                                                  Ed

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                                                                                                                                                                                                                  ed_CT
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    Here I am still typing after over 5 years since going stage IV.   I did a Nexavar/Temodar trial in 2005.   It worked well for me – unfortunately not the silver bullet for most others.  However – it does point out that there is hope and keep looking for the latest clinical trials.

                                                                                                                                                                                                                     

                                                                                                                                                                                                                    Ed

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                                                                                                                                                                                                                    ed_CT
                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                      Here I am still typing after over 5 years since going stage IV.   I did a Nexavar/Temodar trial in 2005.   It worked well for me – unfortunately not the silver bullet for most others.  However – it does point out that there is hope and keep looking for the latest clinical trials.

                                                                                                                                                                                                                       

                                                                                                                                                                                                                      Ed

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                                                                                                                                                                                                                      ed_CT
                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                        Here I am still typing after over 5 years since going stage IV.   I did a Nexavar/Temodar trial in 2005.   It worked well for me – unfortunately not the silver bullet for most others.  However – it does point out that there is hope and keep looking for the latest clinical trials.

                                                                                                                                                                                                                         

                                                                                                                                                                                                                        Ed

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                                                                                                                                                                                                                        himynameiskevin
                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                          Hi. I'm alive and wide-eyed in my time.

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                                                                                                                                                                                                                          himynameiskevin
                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                            Hi. I'm alive and wide-eyed in my time.

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                                                                                                                                                                                                                            Swanee
                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                              CHARLIE!  SIR!

                                                                                                                                                                                                                              Here I am, Swanee, reporting for roll call!   I am new to this program, don't know the ropes yet, but I know I belong to this

                                                                                                                                                                                                                              group!!!    I was diagnosed with MM (March 2010)  and have been in a slight fog since.   I have spent the last week

                                                                                                                                                                                                                              reading all the past bulletins and familiarizing myself with everyone at MRF.  What an amazing group, I am so comforted

                                                                                                                                                                                                                              to know that you are all out there in perhaps the same boat as me………..and there is support for what I am going through.

                                                                                                                                                                                                                              I already feel like I know some of you, yet I have not spoken a word.  There is an energy here that motivates one into

                                                                                                                                                                                                                              optimism and positive results, I feel a connection!  I've been  a pretty lost soul as far as this melanoma is concerned.

                                                                                                                                                                                                                              I know I am in the best place for treatment but I  am not feeling confident with the treatment options that have been

                                                                                                                                                                                                                              presented to me.   It is so hard to negotiate your way through this and one has to decipher what is good for science

                                                                                                                                                                                                                              and what is good for me!  I am all about helping others……..but I want to live too!    All of your stories and experiences

                                                                                                                                                                                                                              have given me balance and the ability to help me figure out where I am at in this disease and the courage to give my

                                                                                                                                                                                                                              O.K. to what I want, even if it goes against the grain, thank you!!  I've decided that there is no rhyme or reason to this

                                                                                                                                                                                                                              disease and it is pretty much a crap shoot!  One needs to follow their gut feeling and follow their heart  with regard to

                                                                                                                                                                                                                              treatment.  It feels so good to write this……….welcome to my heart and God Bless all of us!!

                                                                                                                                                                                                                               

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                                                                                                                                                                                                                                Swanee
                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                  Hello, my name is swanee and I am a melanoma warrior!

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                                                                                                                                                                                                                                  Swanee
                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                    Hello, my name is swanee and I am a melanoma warrior!

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                                                                                                                                                                                                                                  Swanee
                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                    CHARLIE!  SIR!

                                                                                                                                                                                                                                    Here I am, Swanee, reporting for roll call!   I am new to this program, don't know the ropes yet, but I know I belong to this

                                                                                                                                                                                                                                    group!!!    I was diagnosed with MM (March 2010)  and have been in a slight fog since.   I have spent the last week

                                                                                                                                                                                                                                    reading all the past bulletins and familiarizing myself with everyone at MRF.  What an amazing group, I am so comforted

                                                                                                                                                                                                                                    to know that you are all out there in perhaps the same boat as me………..and there is support for what I am going through.

                                                                                                                                                                                                                                    I already feel like I know some of you, yet I have not spoken a word.  There is an energy here that motivates one into

                                                                                                                                                                                                                                    optimism and positive results, I feel a connection!  I've been  a pretty lost soul as far as this melanoma is concerned.

                                                                                                                                                                                                                                    I know I am in the best place for treatment but I  am not feeling confident with the treatment options that have been

                                                                                                                                                                                                                                    presented to me.   It is so hard to negotiate your way through this and one has to decipher what is good for science

                                                                                                                                                                                                                                    and what is good for me!  I am all about helping others……..but I want to live too!    All of your stories and experiences

                                                                                                                                                                                                                                    have given me balance and the ability to help me figure out where I am at in this disease and the courage to give my

                                                                                                                                                                                                                                    O.K. to what I want, even if it goes against the grain, thank you!!  I've decided that there is no rhyme or reason to this

                                                                                                                                                                                                                                    disease and it is pretty much a crap shoot!  One needs to follow their gut feeling and follow their heart  with regard to

                                                                                                                                                                                                                                    treatment.  It feels so good to write this……….welcome to my heart and God Bless all of us!!

                                                                                                                                                                                                                                     

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                                                                                                                                                                                                                                    Frannie55
                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                      I am stage IV and still kicking. I have been NED since April of this year. I was first dx in August of '09 and moved right into stage IV in February of this year. I am trying the vitamins and supplements to help boost my immune system. I am also living my life! Of course the clear scans make that very easy to do. 

                                                                                                                                                                                                                                      Best wishes to all of you out there no matter what stage you are!

                                                                                                                                                                                                                                      Frannie in West Michigan

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                                                                                                                                                                                                                                      Frannie55
                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                        I am stage IV and still kicking. I have been NED since April of this year. I was first dx in August of '09 and moved right into stage IV in February of this year. I am trying the vitamins and supplements to help boost my immune system. I am also living my life! Of course the clear scans make that very easy to do. 

                                                                                                                                                                                                                                        Best wishes to all of you out there no matter what stage you are!

                                                                                                                                                                                                                                        Frannie in West Michigan

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                                                                                                                                                                                                                                        StanN
                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                          Stage 3 mirco mets to 14 nodes…2001 2.2 Breslow  top of the head

                                                                                                                                                                                                                                          Radical neck Disection Oct 24 2001  started H.D interferon Dec 12,2001 – sept 12 2002

                                                                                                                                                                                                                                          N.E.D as of last scan  oct 2010

                                                                                                                                                                                                                                            Still hurting over the death of my friend from here   J.T ….I'm not sure of the exact date of his death  but it's about 2 year  now…

                                                                                                                                                                                                                                          You fought the hard  fight  buddy,,Miss you Joey..Grahm

                                                                                                                                                                                                                                              StanN

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                                                                                                                                                                                                                                          StanN
                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                            Stage 3 mirco mets to 14 nodes…2001 2.2 Breslow  top of the head

                                                                                                                                                                                                                                            Radical neck Disection Oct 24 2001  started H.D interferon Dec 12,2001 – sept 12 2002

                                                                                                                                                                                                                                            N.E.D as of last scan  oct 2010

                                                                                                                                                                                                                                              Still hurting over the death of my friend from here   J.T ….I'm not sure of the exact date of his death  but it's about 2 year  now…

                                                                                                                                                                                                                                            You fought the hard  fight  buddy,,Miss you Joey..Grahm

                                                                                                                                                                                                                                                StanN

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                                                                                                                                                                                                                                            WalterA
                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                              I've been Stage IV since March 2008. I'm very much alive and optimistic enough that I remarried abour a year ago.

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                                                                                                                                                                                                                                              WalterA
                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                I've been Stage IV since March 2008. I'm very much alive and optimistic enough that I remarried abour a year ago.

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                                                                                                                                                                                                                                                  WalterA
                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                    Should've added my name. WalterA

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                                                                                                                                                                                                                                                    WalterA
                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                      Should've added my name. WalterA

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                                                                                                                                                                                                                                                    Harry in Fair Oaks
                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                      10+ years NED from Stage IV Dx (lung met surgically removed).  Annual scans coming up soon.  Sometimes I can't believe how fortunate I've been.

                                                                                                                                                                                                                                                      I'm not new to the BB.  I've been posting since 1997, when I was Dx'd Stage III.  I used to be just "Harry," – but someone "stole" my name.  That's what I deserve for being lazy and not registering for the new site until now.

                                                                                                                                                                                                                                                      Best wishes to all,

                                                                                                                                                                                                                                                      Harry

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                                                                                                                                                                                                                                                      Harry in Fair Oaks
                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                        10+ years NED from Stage IV Dx (lung met surgically removed).  Annual scans coming up soon.  Sometimes I can't believe how fortunate I've been.

                                                                                                                                                                                                                                                        I'm not new to the BB.  I've been posting since 1997, when I was Dx'd Stage III.  I used to be just "Harry," – but someone "stole" my name.  That's what I deserve for being lazy and not registering for the new site until now.

                                                                                                                                                                                                                                                        Best wishes to all,

                                                                                                                                                                                                                                                        Harry

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                                                                                                                                                                                                                                                        Blueyes
                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                          Something prompted me to stop by, glad I did, it's been too long!

                                                                                                                                                                                                                                                           Stage IV since Jan 09, brain and abdominal mets. Abdominal surgery, IL-2, 2 Grammas and 3 craniotomies. NED since October of this year…woohoo! So it's PETs and MRI's every three months buts that's ok. I'm kicking ass and taking names and I have an amazing team of Dr's. I make sure they will NEVER forget me! I remind them often tha they have MY LIFE in their hands and I won't go quietly! I fight, I live and I love and laugh.

                                                                                                                                                                                                                                                          I accept whatever is in store for me but I'll NEVER quit! My Harley sits in our garage, patiently waiting for me this coming spring and I fully intend to be on it. We choose to live and we choose to fight; and I believe that as long as we do so, we're beating this ugly disease. There are angels among us and we are truly blessed to be in their company!!

                                                                                                                                                                                                                                                          NOT this girl and NOT today! yes

                                                                                                                                                                                                                                                          Kelly aka Blueyes

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                                                                                                                                                                                                                                                          Blueyes
                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                            Something prompted me to stop by, glad I did, it's been too long!

                                                                                                                                                                                                                                                             Stage IV since Jan 09, brain and abdominal mets. Abdominal surgery, IL-2, 2 Grammas and 3 craniotomies. NED since October of this year…woohoo! So it's PETs and MRI's every three months buts that's ok. I'm kicking ass and taking names and I have an amazing team of Dr's. I make sure they will NEVER forget me! I remind them often tha they have MY LIFE in their hands and I won't go quietly! I fight, I live and I love and laugh.

                                                                                                                                                                                                                                                            I accept whatever is in store for me but I'll NEVER quit! My Harley sits in our garage, patiently waiting for me this coming spring and I fully intend to be on it. We choose to live and we choose to fight; and I believe that as long as we do so, we're beating this ugly disease. There are angels among us and we are truly blessed to be in their company!!

                                                                                                                                                                                                                                                            NOT this girl and NOT today! yes

                                                                                                                                                                                                                                                            Kelly aka Blueyes

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                                                                                                                                                                                                                                                            Erica A
                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                              My husband Ken (diagnosed in 2004, Stage IV in 2005) has been NED since June 2005.   He goes in for bloodwork once a year, but otherwise we live a completely normal life now. I never would have guessed I would be able to say that.  There is hope for enduring remission after stage IV melanoma and those fighting the disease now should continue to believe that!

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                                                                                                                                                                                                                                                              Erica A
                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                My husband Ken (diagnosed in 2004, Stage IV in 2005) has been NED since June 2005.   He goes in for bloodwork once a year, but otherwise we live a completely normal life now. I never would have guessed I would be able to say that.  There is hope for enduring remission after stage IV melanoma and those fighting the disease now should continue to believe that!

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                                                                                                                                                                                                                                                                MRFUser2011
                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                  Hi Charlie,

                                                                                                                                                                                                                                                                  This post scared the hell out of me when I joined this list last month.  I am sorry to read about the loss of your girlfriend and honestly, quit reading at that point.  Tonight, I made it all the way through the whole post.  I "officially" joined the ranks of stage IV last night when my surgeon reviewed my latest scans and said the nodule in my right lung  "definitely presents like melanoma".  Said nodule will be removed next week, even my healer says surgery is the best option.  I am a newbie and just hope I get to post doe years to come as stage IV, NED.  Thanks to all of you that are here, sharing  your stories, helping us newcomers find our way.

                                                                                                                                                                                                                                                                  Blessings, Shari

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                                                                                                                                                                                                                                                                  MRFUser2011
                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                    Hi Charlie,

                                                                                                                                                                                                                                                                    This post scared the hell out of me when I joined this list last month.  I am sorry to read about the loss of your girlfriend and honestly, quit reading at that point.  Tonight, I made it all the way through the whole post.  I "officially" joined the ranks of stage IV last night when my surgeon reviewed my latest scans and said the nodule in my right lung  "definitely presents like melanoma".  Said nodule will be removed next week, even my healer says surgery is the best option.  I am a newbie and just hope I get to post doe years to come as stage IV, NED.  Thanks to all of you that are here, sharing  your stories, helping us newcomers find our way.

                                                                                                                                                                                                                                                                    Blessings, Shari

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                                                                                                                                                                                                                                                                      Jerry from Cape Cod
                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                        Shari,

                                                                                                                                                                                                                                                                        I'm sorry that you had to join the stage IV "club" It sounds like you and your doctor have things mapped out well.  You'll find out that there is a good group here that is ready to jump in and support you when needed.

                                                                                                                                                                                                                                                                        Jerry from Cape Cod

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                                                                                                                                                                                                                                                                        Jerry from Cape Cod
                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                          Shari,

                                                                                                                                                                                                                                                                          I'm sorry that you had to join the stage IV "club" It sounds like you and your doctor have things mapped out well.  You'll find out that there is a good group here that is ready to jump in and support you when needed.

                                                                                                                                                                                                                                                                          Jerry from Cape Cod

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                                                                                                                                                                                                                                                                        elefk
                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                          What treatments worked for you, Charlie? I'm in desperate need to start something, but I hear that standard chemo (including interluken) has a bad track record.

                                                                                                                                                                                                                                                                          Earl

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                                                                                                                                                                                                                                                                          elefk
                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                            What treatments worked for you, Charlie? I'm in desperate need to start something, but I hear that standard chemo (including interluken) has a bad track record.

                                                                                                                                                                                                                                                                            Earl

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                                                                                                                                                                                                                                                                            Wetterhorn
                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                              Yep – Still here and still battling. Stage IV since March 2009 with a small nodule in lung. Removed with a VATS surgery in April 2009. Recurrence in August 2009 on leg. Also removed via surgery. Got to enjoy 17 months of NED until LAST THURSDAY!!! Suspected lesion in my "bowel region". Waiting on CT to confirm what PET showed already. Surgical consult on Monday. Hope they can get it all.

                                                                                                                                                                                                                                                                              Wetterhorn

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                                                                                                                                                                                                                                                                              Wetterhorn
                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                Yep – Still here and still battling. Stage IV since March 2009 with a small nodule in lung. Removed with a VATS surgery in April 2009. Recurrence in August 2009 on leg. Also removed via surgery. Got to enjoy 17 months of NED until LAST THURSDAY!!! Suspected lesion in my "bowel region". Waiting on CT to confirm what PET showed already. Surgical consult on Monday. Hope they can get it all.

                                                                                                                                                                                                                                                                                Wetterhorn

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                                                                                                                                                                                                                                                                                Carole K
                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                  Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                  Love and Light

                                                                                                                                                                                                                                                                                  Carole

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                                                                                                                                                                                                                                                                                  Carole K
                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                    Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                    Love and Light

                                                                                                                                                                                                                                                                                    Carole

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                                                                                                                                                                                                                                                                                    Carole K
                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                      Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                      Love and Light

                                                                                                                                                                                                                                                                                      Carole

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                                                                                                                                                                                                                                                                                      Carole K
                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                        Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                        Love and Light

                                                                                                                                                                                                                                                                                        Carole

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                                                                                                                                                                                                                                                                                        Carole K
                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                          Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                          Love and Light

                                                                                                                                                                                                                                                                                          Carole

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                                                                                                                                                                                                                                                                                          Carole K
                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                            Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                            Love and Light

                                                                                                                                                                                                                                                                                            Carole

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                                                                                                                                                                                                                                                                                            Carole K
                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                              Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                              Love and Light

                                                                                                                                                                                                                                                                                              Carole

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                                                                                                                                                                                                                                                                                              Carole K
                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                Love and Light

                                                                                                                                                                                                                                                                                                Carole

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                                                                                                                                                                                                                                                                                                Carole K
                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                  Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                  Love and Light

                                                                                                                                                                                                                                                                                                  Carole

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                                                                                                                                                                                                                                                                                                  Carole K
                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                    Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                    Love and Light

                                                                                                                                                                                                                                                                                                    Carole

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                                                                                                                                                                                                                                                                                                    Carole K
                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                      Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                      Love and Light

                                                                                                                                                                                                                                                                                                      Carole

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                                                                                                                                                                                                                                                                                                      Carole K
                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                        Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                        Love and Light

                                                                                                                                                                                                                                                                                                        Carole

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                                                                                                                                                                                                                                                                                                        Carole K
                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                          Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                          Love and Light

                                                                                                                                                                                                                                                                                                          Carole

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                                                                                                                                                                                                                                                                                                          Carole K
                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                            Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                            Love and Light

                                                                                                                                                                                                                                                                                                            Carole

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                                                                                                                                                                                                                                                                                                            Carole K
                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                              Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                              Love and Light

                                                                                                                                                                                                                                                                                                              Carole

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                                                                                                                                                                                                                                                                                                              Carole K
                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                Carole K… here UNDEAD and don't plan on checking out any time soon.. Hang in everyone and DON'T EVER GIVE UP HOPE. 

                                                                                                                                                                                                                                                                                                                Love and Light

                                                                                                                                                                                                                                                                                                                Carole

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                                                                                                                                                                                                                                                                                                                EddieM
                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                  That sure is some thread. Thank you all for sharing.

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                                                                                                                                                                                                                                                                                                                  EddieM
                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                    That sure is some thread. Thank you all for sharing.

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                                                                                                                                                                                                                                                                                                                      KellieSue
                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                        Very undead here.

                                                                                                                                                                                                                                                                                                                        Progressed to Stage IV June 8, 2008 with lung mets. Had a few surgeries, a few trials, some IL-2. I'm still here and still fighting. Currently have lung mets and a thyroid met(that is probably dead)

                                                                                                                                                                                                                                                                                                                        Kellie(from Iowa) Stage IV

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                                                                                                                                                                                                                                                                                                                        KellieSue
                                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                                          Very undead here.

                                                                                                                                                                                                                                                                                                                          Progressed to Stage IV June 8, 2008 with lung mets. Had a few surgeries, a few trials, some IL-2. I'm still here and still fighting. Currently have lung mets and a thyroid met(that is probably dead)

                                                                                                                                                                                                                                                                                                                          Kellie(from Iowa) Stage IV

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                                                                                                                                                                                                                                                                                                                        K in LA
                                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                                          First time poster.  My husband has been Stage IV since March 2009 (had a stage I removed in spring 2001 with a sentinal node biopsy that showed no sign that the disease had spread beyond its origial site) & is still hanging in there after failing on IL-2 & another clinical trial specific to his hospital (I forget the name but it involved some high dose chemo that left him barely able to walk for months due to peripheral neuropathy).  He was one of the 1st to be enrolled on phase 2 of the PLX trial & had among the worst side effects that the Dr had seen (really bad rheumatiod arthritis, stomach pain & numerous squamous cell carcinomas) & his dosage was reduced to half.  He was incredibly fit & healthy before all this started so put himself through a gruelling physiothery program & for the last 6 months or so has been pretty much back to his old self (except for residual neuropathy still wearing off in his hands & feet, which is where the rheumatoid arthritis has also settled), going to the gym etc.  However, several new sub-q lumps appeared in Dec. & more have followed so after about 15 months, he's now off PLX & due to start Ipi tomorrow.  We know he has a strong immune system & that these new tumors are the result of a ras mutation located on on the surface of the cancer cells, so we're hoping his T cells will seek & destroy them.  

                                                                                                                                                                                                                                                                                                                          Anyone living with MM is certainly a warrior — several of our "friends" have stopped asking me about his treatments because the details are so horrific (needless to say they're the same people who whine about a trip to the dentist or a bit of a cold on facebook!)  Fighting this or any other cancer isn't a "battle" (I loathe that cliche) it's a war.  Sometimes you feel like you're hunting down guerilla soldiers; sometimes slogging away in the trenches; sometimes engaged in strategic or more general bombings.  You also find out pretty quickly who your true allies are & who are the "deserters" among your family (thankfully none) & friends (a few surprises there!).  I thought we had a great marriage before all this started but all we've been through together over the last 2 years has made that connection even deeper and stronger; for that alone I proudly wear black.

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                                                                                                                                                                                                                                                                                                                          K in LA
                                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                                            First time poster.  My husband has been Stage IV since March 2009 (had a stage I removed in spring 2001 with a sentinal node biopsy that showed no sign that the disease had spread beyond its origial site) & is still hanging in there after failing on IL-2 & another clinical trial specific to his hospital (I forget the name but it involved some high dose chemo that left him barely able to walk for months due to peripheral neuropathy).  He was one of the 1st to be enrolled on phase 2 of the PLX trial & had among the worst side effects that the Dr had seen (really bad rheumatiod arthritis, stomach pain & numerous squamous cell carcinomas) & his dosage was reduced to half.  He was incredibly fit & healthy before all this started so put himself through a gruelling physiothery program & for the last 6 months or so has been pretty much back to his old self (except for residual neuropathy still wearing off in his hands & feet, which is where the rheumatoid arthritis has also settled), going to the gym etc.  However, several new sub-q lumps appeared in Dec. & more have followed so after about 15 months, he's now off PLX & due to start Ipi tomorrow.  We know he has a strong immune system & that these new tumors are the result of a ras mutation located on on the surface of the cancer cells, so we're hoping his T cells will seek & destroy them.  

                                                                                                                                                                                                                                                                                                                            Anyone living with MM is certainly a warrior — several of our "friends" have stopped asking me about his treatments because the details are so horrific (needless to say they're the same people who whine about a trip to the dentist or a bit of a cold on facebook!)  Fighting this or any other cancer isn't a "battle" (I loathe that cliche) it's a war.  Sometimes you feel like you're hunting down guerilla soldiers; sometimes slogging away in the trenches; sometimes engaged in strategic or more general bombings.  You also find out pretty quickly who your true allies are & who are the "deserters" among your family (thankfully none) & friends (a few surprises there!).  I thought we had a great marriage before all this started but all we've been through together over the last 2 years has made that connection even deeper and stronger; for that alone I proudly wear black.

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                                                                                                                                                                                                                                                                                                                            JoanR
                                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                                              Good to hear from you..is this a "new" dx, I think you must have had mel in every known body part by now, are you starting on the second round ??   I miss you old boy as I don't go to chat much….as always your postings are encouraging, albeit blunt !!!    Love ya'…Warpie

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                                                                                                                                                                                                                                                                                                                              JoanR
                                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                                Good to hear from you..is this a "new" dx, I think you must have had mel in every known body part by now, are you starting on the second round ??   I miss you old boy as I don't go to chat much….as always your postings are encouraging, albeit blunt !!!    Love ya'…Warpie

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                                                                                                                                                                                                                                                                                                                                Rydell
                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                  Thank you, Charlie! I am new to all of this. I was just diagnosed with Stage IV Melanoma after my double craniotomy in January 2011.

                                                                                                                                                                                                                                                                                                                                  Keep Smiling!

                                                                                                                                                                                                                                                                                                                                  Amanda

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                                                                                                                                                                                                                                                                                                                                  Rydell
                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                    Thank you, Charlie! I am new to all of this. I was just diagnosed with Stage IV Melanoma after my double craniotomy in January 2011.

                                                                                                                                                                                                                                                                                                                                    Keep Smiling!

                                                                                                                                                                                                                                                                                                                                    Amanda

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                                                                                                                                                                                                                                                                                                                                    rbruce
                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                      NOT TODAY MEL!!!!!!!!!!!!

                                                                                                                                                                                                                                                                                                                                      Just diagnosed as Stage 4 in March.  Started as a mole on my back and now tiny tumors in my lungs.  Been waiting for results of genetic testing to my biopsy samples in order to determine course of treatment.  Going Wednesday to see Dr. Steven O'Day at The Angeles Clinic in Los Angeles and then to Dr. Daud at UCSF on Thursday.  I AM GOING TO KICK THE SNOT OUT OF THIS FRIGGIN DISEASE!!!  There are too many new discoveries, by amazing Doctors and researchers that are changing the game.  Inhibitors, vaccines, precision surgery together will rid of of this scourge.  I now have hope and am working daily on strength and courage.  Keep up the fight!

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                                                                                                                                                                                                                                                                                                                                      rbruce
                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                        NOT TODAY MEL!!!!!!!!!!!!

                                                                                                                                                                                                                                                                                                                                        Just diagnosed as Stage 4 in March.  Started as a mole on my back and now tiny tumors in my lungs.  Been waiting for results of genetic testing to my biopsy samples in order to determine course of treatment.  Going Wednesday to see Dr. Steven O'Day at The Angeles Clinic in Los Angeles and then to Dr. Daud at UCSF on Thursday.  I AM GOING TO KICK THE SNOT OUT OF THIS FRIGGIN DISEASE!!!  There are too many new discoveries, by amazing Doctors and researchers that are changing the game.  Inhibitors, vaccines, precision surgery together will rid of of this scourge.  I now have hope and am working daily on strength and courage.  Keep up the fight!

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                                                                                                                                                                                                                                                                                                                                          Terra
                                                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                                                            Hi, my husband, Derek, was diagnosed in 2001 at stage III, SNB and WLE were both negative.

                                                                                                                                                                                                                                                                                                                                            2007 – two local recurrances in spring surgically removed, 1 year interferon and radiation, PET showed a lymph node in right hilum, watch and wait

                                                                                                                                                                                                                                                                                                                                            2010 – new nodule in left lung found in April, had surgery in June, PET in AUG showed the same lymph node in right hilum from 07 had grown, did chemo while looking for a surgeon to remove it, chemo did nothing, removed in Jan 2011

                                                                                                                                                                                                                                                                                                                                            2011 – March scans showed mets to the liver, bone, muscle, kidney, and lung, started P13K and MEK inhibitor trial three and a half wees ago- scans next week

                                                                                                                                                                                                                                                                                                                                            Derek and I married in 2006 and we had our first daughter in 07 (just before local recurrance), second in 09 (the week he finished interferon), and are expecting our third in June 11 (clearly not planned under the circumstances) – she is due at the end of his second cycle and secnd scans, over the last couple of years he has sold his retail business (17 years in business) and moved into investment properties and I have continued teaching.  You really just have to keep living and moving ahead no matter what stage you are.  Good luck to everyone. 

                                                                                                                                                                                                                                                                                                                                            Terra

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                                                                                                                                                                                                                                                                                                                                            Terra
                                                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                                                              Hi, my husband, Derek, was diagnosed in 2001 at stage III, SNB and WLE were both negative.

                                                                                                                                                                                                                                                                                                                                              2007 – two local recurrances in spring surgically removed, 1 year interferon and radiation, PET showed a lymph node in right hilum, watch and wait

                                                                                                                                                                                                                                                                                                                                              2010 – new nodule in left lung found in April, had surgery in June, PET in AUG showed the same lymph node in right hilum from 07 had grown, did chemo while looking for a surgeon to remove it, chemo did nothing, removed in Jan 2011

                                                                                                                                                                                                                                                                                                                                              2011 – March scans showed mets to the liver, bone, muscle, kidney, and lung, started P13K and MEK inhibitor trial three and a half wees ago- scans next week

                                                                                                                                                                                                                                                                                                                                              Derek and I married in 2006 and we had our first daughter in 07 (just before local recurrance), second in 09 (the week he finished interferon), and are expecting our third in June 11 (clearly not planned under the circumstances) – she is due at the end of his second cycle and secnd scans, over the last couple of years he has sold his retail business (17 years in business) and moved into investment properties and I have continued teaching.  You really just have to keep living and moving ahead no matter what stage you are.  Good luck to everyone. 

                                                                                                                                                                                                                                                                                                                                              Terra

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                                                                                                                                                                                                                                                                                                                                            thebunches
                                                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                                                              This is amazing and so inspiring. Much love and hugs to all of us warriors (patients and caregivers!)!!

                                                                                                                                                                                                                                                                                                                                              ‎2 Corinthians 4:17-18    "For our troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

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                                                                                                                                                                                                                                                                                                                                              thebunches
                                                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                                                This is amazing and so inspiring. Much love and hugs to all of us warriors (patients and caregivers!)!!

                                                                                                                                                                                                                                                                                                                                                ‎2 Corinthians 4:17-18    "For our troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

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                                                                                                                                                                                                                                                                                                                                                Sandi Dalton
                                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                                  Thank you, Charlie S!

                                                                                                                                                                                                                                                                                                                                                  I have been so frightened. I advanced to stage 4 due to a brain met, craini, chemo and whole brain radiation. Now involved in a phase 1 trial at Moffitt. I had been wondering when I was going to die//////NOW I LIVE!

                                                                                                                                                                                                                                                                                                                                                  God bless you, Charlie!

                                                                                                                                                                                                                                                                                                                                                  Sandi

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                                                                                                                                                                                                                                                                                                                                                  Sandi Dalton
                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                    Thank you, Charlie S!

                                                                                                                                                                                                                                                                                                                                                    I have been so frightened. I advanced to stage 4 due to a brain met, craini, chemo and whole brain radiation. Now involved in a phase 1 trial at Moffitt. I had been wondering when I was going to die//////NOW I LIVE!

                                                                                                                                                                                                                                                                                                                                                    God bless you, Charlie!

                                                                                                                                                                                                                                                                                                                                                    Sandi

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                                                                                                                                                                                                                                                                                                                                                    shellebrownies
                                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                                      Add us to the Stage IV ranks…newly diagnosed.

                                                                                                                                                                                                                                                                                                                                                      1st diagnosed May 09 at stage IA.

                                                                                                                                                                                                                                                                                                                                                      No sign of anything for 2 years and then suddenly there's a tumor under hubby's right arm…no warning at all. Surgeon removed tumor and matted lymph nodes and within a month, mets have spread to bones and liver. We are still undergoing tests to help with choice of trial, so, technically, we have not yet begun to fight!

                                                                                                                                                                                                                                                                                                                                                      Let the undead walking begin!

                                                                                                                                                                                                                                                                                                                                                      Michelle, wife of Don, Stage IV

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                                                                                                                                                                                                                                                                                                                                                      shellebrownies
                                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                                        Add us to the Stage IV ranks…newly diagnosed.

                                                                                                                                                                                                                                                                                                                                                        1st diagnosed May 09 at stage IA.

                                                                                                                                                                                                                                                                                                                                                        No sign of anything for 2 years and then suddenly there's a tumor under hubby's right arm…no warning at all. Surgeon removed tumor and matted lymph nodes and within a month, mets have spread to bones and liver. We are still undergoing tests to help with choice of trial, so, technically, we have not yet begun to fight!

                                                                                                                                                                                                                                                                                                                                                        Let the undead walking begin!

                                                                                                                                                                                                                                                                                                                                                        Michelle, wife of Don, Stage IV

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                                                                                                                                                                                                                                                                                                                                                        mommydog
                                                                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                                                                          Wife of an undead husband here.  Diagnosed in 1998, Stage II.  Reappeared last November, diagnosed Stage IV with mets in lungs, liver and bones. After 8 weeks of GSK Braf/Mek therapy, rumors have shrunk 62%.  Steve hopes to be undead for a very long time.

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                                                                                                                                                                                                                                                                                                                                                          mommydog
                                                                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                                                                            Wife of an undead husband here.  Diagnosed in 1998, Stage II.  Reappeared last November, diagnosed Stage IV with mets in lungs, liver and bones. After 8 weeks of GSK Braf/Mek therapy, rumors have shrunk 62%.  Steve hopes to be undead for a very long time.

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                                                                                                                                                                                                                                                                                                                                                            mommydog
                                                                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                                                                              Wife of an undead husband here.  Diagnosed in 1998, Stage II.  Reappeared last November, diagnosed Stage IV with mets in lungs, liver and bones. After 8 weeks of GSK Braf/Mek therapy, rumors have shrunk 62%.  Steve hopes to be undead for a very long time.

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                                                                                                                                                                                                                                                                                                                                                                carol b
                                                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                                                  Stage 4 and fighting every step of the way… currently on IL2 and a partial responder. Im a new grandma and found out on mothers day im gonna be a grandma again. I aint checking out no time soon. I keep my head up, most time,,look into the future playing with my grandbabies, believing my prayers will be answered and i will be cured!!!!!!

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                                                                                                                                                                                                                                                                                                                                                                  carol b
                                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                                    Stage 4 and fighting every step of the way… currently on IL2 and a partial responder. Im a new grandma and found out on mothers day im gonna be a grandma again. I aint checking out no time soon. I keep my head up, most time,,look into the future playing with my grandbabies, believing my prayers will be answered and i will be cured!!!!!!

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                                                                                                                                                                                                                                                                                                                                                                  mommydog
                                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                                    Wife of an undead husband here.  Diagnosed in 1998, Stage II.  Reappeared last November, diagnosed Stage IV with mets in lungs, liver and bones. After 8 weeks of GSK Braf/Mek therapy, rumors have shrunk 62%.  Steve hopes to be undead for a very long time.

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                                                                                                                                                                                                                                                                                                                                                                    dodgedh2
                                                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                                                      I'm new to the board and I'm a three year survivor of Stage 4. I've been looking for others that are fighting and surviving. My next scan is coming up next month and I still tense up befor each scan until I get the results. I'm NED, but still worry about recurrance. Glad to see and read that there are others out there going through the same struggles and stubbornly remaining undead!

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                                                                                                                                                                                                                                                                                                                                                                      dodgedh2
                                                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                                                        I'm new to the board and I'm a three year survivor of Stage 4. I've been looking for others that are fighting and surviving. My next scan is coming up next month and I still tense up befor each scan until I get the results. I'm NED, but still worry about recurrance. Glad to see and read that there are others out there going through the same struggles and stubbornly remaining undead!

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                                                                                                                                                                                                                                                                                                                                                                        dodgedh2
                                                                                                                                                                                                                                                                                                                                                                        Participant
                                                                                                                                                                                                                                                                                                                                                                          I’m new to the board and I'm a three year survivor of Stage 4. I’ve been looking for others that are fighting and surviving. My next scan is coming up next month and I still tense up befor each scan until I get the results. I’m NED, but still worry about recurrance. Glad to see and read that there are others out there going through the same struggles and stubbornly remaining undead!

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                                                                                                                                                                                                                                                                                                                                                                          dodgedh2
                                                                                                                                                                                                                                                                                                                                                                          Participant
                                                                                                                                                                                                                                                                                                                                                                            I’m new to the board and I'm a three year survivor of Stage 4. I’ve been looking for others that are fighting and surviving. My next scan is coming up next month and I still tense up befor each scan until I get the results. I’m NED, but still worry about recurrance. Glad to see and read that there are others out there going through the same struggles and stubbornly remaining undead!

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                                                                                                                                                                                                                                                                                                                                                                            momof2kids
                                                                                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                                                                                              Think we need to keep this Stage IV survivor thread continuing!  If you are Stage IV, and still kickin' a$$ on this earth, keep posting, it gives the rest of us Stage IV (like me) or Stage III, etc more hope to continue on! 

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                                                                                                                                                                                                                                                                                                                                                                              momof2kids
                                                                                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                                                                                Think we need to keep this Stage IV survivor thread continuing!  If you are Stage IV, and still kickin' a$$ on this earth, keep posting, it gives the rest of us Stage IV (like me) or Stage III, etc more hope to continue on! 

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                                                                                                                                                                                                                                                                                                                                                                                momof2kids
                                                                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                                                                  Think we need to keep this Stage IV survivor thread continuing!  If you are Stage IV, and still kickin' a$$ on this earth, keep posting, it gives the rest of us Stage IV (like me) or Stage III, etc more hope to continue on! 

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                                                                                                                                                                                                                                                                                                                                                                                  cheryl brodersen
                                                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                                                    Go Charlie, go Charlie, go Charlie!

                                                                                                                                                                                                                                                                                                                                                                                    Not today…because we have a 9:30 tee time. My husband, Steve, has been Stage IV since January of 2009. He is a true warrior and my life's inspiration.

                                                                                                                                                                                                                                                                                                                                                                                    Keep fighting! Kick some serious ass, ya'll.

                                                                                                                                                                                                                                                                                                                                                                                    Cheryl

                                                                                                                                                                                                                                                                                                                                                                                    Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                    cheryl brodersen
                                                                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                                                                      Go Charlie, go Charlie, go Charlie!

                                                                                                                                                                                                                                                                                                                                                                                      Not today…because we have a 9:30 tee time. My husband, Steve, has been Stage IV since January of 2009. He is a true warrior and my life's inspiration.

                                                                                                                                                                                                                                                                                                                                                                                      Keep fighting! Kick some serious ass, ya'll.

                                                                                                                                                                                                                                                                                                                                                                                      Cheryl

                                                                                                                                                                                                                                                                                                                                                                                      Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                      cheryl brodersen
                                                                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                                                                        Go Charlie, go Charlie, go Charlie!

                                                                                                                                                                                                                                                                                                                                                                                        Not today…because we have a 9:30 tee time. My husband, Steve, has been Stage IV since January of 2009. He is a true warrior and my life's inspiration.

                                                                                                                                                                                                                                                                                                                                                                                        Keep fighting! Kick some serious ass, ya'll.

                                                                                                                                                                                                                                                                                                                                                                                        Cheryl

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                                                                                                                                                                                                                                                                                                                                                                                        Joyce
                                                                                                                                                                                                                                                                                                                                                                                        Participant
                                                                                                                                                                                                                                                                                                                                                                                          Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                          Joyce
                                                                                                                                                                                                                                                                                                                                                                                          Participant
                                                                                                                                                                                                                                                                                                                                                                                            Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                            Joyce
                                                                                                                                                                                                                                                                                                                                                                                            Participant
                                                                                                                                                                                                                                                                                                                                                                                              Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                              Joyce
                                                                                                                                                                                                                                                                                                                                                                                              Participant
                                                                                                                                                                                                                                                                                                                                                                                                Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                                Joyce
                                                                                                                                                                                                                                                                                                                                                                                                Participant
                                                                                                                                                                                                                                                                                                                                                                                                  Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                                  Joyce
                                                                                                                                                                                                                                                                                                                                                                                                  Participant
                                                                                                                                                                                                                                                                                                                                                                                                    Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                                    Joyce
                                                                                                                                                                                                                                                                                                                                                                                                    Participant
                                                                                                                                                                                                                                                                                                                                                                                                      Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                                      Joyce
                                                                                                                                                                                                                                                                                                                                                                                                      Participant
                                                                                                                                                                                                                                                                                                                                                                                                        Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                                        Joyce
                                                                                                                                                                                                                                                                                                                                                                                                        Participant
                                                                                                                                                                                                                                                                                                                                                                                                          Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                                          Joyce
                                                                                                                                                                                                                                                                                                                                                                                                          Participant
                                                                                                                                                                                                                                                                                                                                                                                                            Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

                                                                                                                                                                                                                                                                                                                                                                                                            Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                            Joyce
                                                                                                                                                                                                                                                                                                                                                                                                            Participant
                                                                                                                                                                                                                                                                                                                                                                                                              Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                                              Joyce
                                                                                                                                                                                                                                                                                                                                                                                                              Participant
                                                                                                                                                                                                                                                                                                                                                                                                                Dick, my husband has been stage 4since 2002. He has been NED since 2006. Dr Lawrence thinks it may not come back! He says they have made giant leaps regarding melanoma in the past few years! Have hope!

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                                                                                                                                                                                                                                                                                                                                                                                                                Richard_K
                                                                                                                                                                                                                                                                                                                                                                                                                Participant
                                                                                                                                                                                                                                                                                                                                                                                                                  Just past two years stage IV. Feeling great.
                                                                                                                                                                                                                                                                                                                                                                                                                  Dick

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                                                                                                                                                                                                                                                                                                                                                                                                                  Richard_K
                                                                                                                                                                                                                                                                                                                                                                                                                  Participant
                                                                                                                                                                                                                                                                                                                                                                                                                    Just past two years stage IV. Feeling great.
                                                                                                                                                                                                                                                                                                                                                                                                                    Dick

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                                                                                                                                                                                                                                                                                                                                                                                                                    Richard_K
                                                                                                                                                                                                                                                                                                                                                                                                                    Participant
                                                                                                                                                                                                                                                                                                                                                                                                                      Just past two years stage IV. Feeling great.
                                                                                                                                                                                                                                                                                                                                                                                                                      Dick

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                                                                                                                                                                                                                                                                                                                                                                                                                      mombase
                                                                                                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                                                                                                        Yipeeeeee!!! Stage IV since who knows…brain met found late June 2011, but many lung mets and a liver met that my onc said preceded the brain met. I decided to forgo the WBR after my brain met was removed, and my brain is still clear of additional mets. I had my second infusion of ipi yesterday. I am being treated in the Sacramento VA Hospital at Mather Field by an incredible oncologist from UC Davis who specializes in melanoma. I could not be happier right now. I am closer to my family and I feel strong and optimistic.

                                                                                                                                                                                                                                                                                                                                                                                                                        Definitely UNDEAD!!!

                                                                                                                                                                                                                                                                                                                                                                                                                        Cristy, Stage IV

                                                                                                                                                                                                                                                                                                                                                                                                                        Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                        mombase
                                                                                                                                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                                                                                                                                          Yipeeeeee!!! Stage IV since who knows…brain met found late June 2011, but many lung mets and a liver met that my onc said preceded the brain met. I decided to forgo the WBR after my brain met was removed, and my brain is still clear of additional mets. I had my second infusion of ipi yesterday. I am being treated in the Sacramento VA Hospital at Mather Field by an incredible oncologist from UC Davis who specializes in melanoma. I could not be happier right now. I am closer to my family and I feel strong and optimistic.

                                                                                                                                                                                                                                                                                                                                                                                                                          Definitely UNDEAD!!!

                                                                                                                                                                                                                                                                                                                                                                                                                          Cristy, Stage IV

                                                                                                                                                                                                                                                                                                                                                                                                                          Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                          mombase
                                                                                                                                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                                                                                                                                            Yipeeeeee!!! Stage IV since who knows…brain met found late June 2011, but many lung mets and a liver met that my onc said preceded the brain met. I decided to forgo the WBR after my brain met was removed, and my brain is still clear of additional mets. I had my second infusion of ipi yesterday. I am being treated in the Sacramento VA Hospital at Mather Field by an incredible oncologist from UC Davis who specializes in melanoma. I could not be happier right now. I am closer to my family and I feel strong and optimistic.

                                                                                                                                                                                                                                                                                                                                                                                                                            Definitely UNDEAD!!!

                                                                                                                                                                                                                                                                                                                                                                                                                            Cristy, Stage IV

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                                                                                                                                                                                                                                                                                                                                                                                                                            Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                            Participant
                                                                                                                                                                                                                                                                                                                                                                                                                              Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

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                                                                                                                                                                                                                                                                                                                                                                                                                              Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                              Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

                                                                                                                                                                                                                                                                                                                                                                                                                                Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                                Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                  Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

                                                                                                                                                                                                                                                                                                                                                                                                                                  Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                  Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                                  Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                    Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

                                                                                                                                                                                                                                                                                                                                                                                                                                    Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                    Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                                    Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                      Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

                                                                                                                                                                                                                                                                                                                                                                                                                                      Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                      Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                                      Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                        Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

                                                                                                                                                                                                                                                                                                                                                                                                                                        Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                        Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                                        Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                          Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

                                                                                                                                                                                                                                                                                                                                                                                                                                          Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                          Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                                          Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                            Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

                                                                                                                                                                                                                                                                                                                                                                                                                                            Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                            Joyce
                                                                                                                                                                                                                                                                                                                                                                                                                                            Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                              Dick has been stage 4since 2002, he was told there was a 10% chance he would be alive in 10 years. Not only is he alive but he has been NED since 2006! I think it was because of the trial which was anti TCLA 4 which is now ipi!

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                                                                                                                                                                                                                                                                                                                                                                                                                                              fdess056
                                                                                                                                                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                Thanks for the upbeat posting, Charlie.  After almost 2 years NED I've just been "downgraded" to stage IV.  I used to get up every AM and remind myself that  "I'm NED today…what do I want to with my day".  I can't say that any more but I will now start each day with "Not today, you son of a bitch,  Melanmoa".  Stay strong, all.

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                                                                                                                                                                                                                                                                                                                                                                                                                                                fdess056
                                                                                                                                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                  Thanks for the upbeat posting, Charlie.  After almost 2 years NED I've just been "downgraded" to stage IV.  I used to get up every AM and remind myself that  "I'm NED today…what do I want to with my day".  I can't say that any more but I will now start each day with "Not today, you son of a bitch,  Melanmoa".  Stay strong, all.

                                                                                                                                                                                                                                                                                                                                                                                                                                                  Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                  fdess056
                                                                                                                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                    Thanks for the upbeat posting, Charlie.  After almost 2 years NED I've just been "downgraded" to stage IV.  I used to get up every AM and remind myself that  "I'm NED today…what do I want to with my day".  I can't say that any more but I will now start each day with "Not today, you son of a bitch,  Melanmoa".  Stay strong, all.

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                                                                                                                                                                                                                                                                                                                                                                                                                                                    Cindy33
                                                                                                                                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                      Charlie,

                                                                                                                                                                                                                                                                                                                                                                                                                                                      You rock. Not stage IV, but have been down some glistening hallways. Love the broken bottle image. Plan to fight like hell and hope to help pave the way for progress so fewer will follow this path.

                                                                                                                                                                                                                                                                                                                                                                                                                                                      Thank you for your message.

                                                                                                                                                                                                                                                                                                                                                                                                                                                      Zeus

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                                                                                                                                                                                                                                                                                                                                                                                                                                                      Cindy33
                                                                                                                                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                        Charlie,

                                                                                                                                                                                                                                                                                                                                                                                                                                                        You rock. Not stage IV, but have been down some glistening hallways. Love the broken bottle image. Plan to fight like hell and hope to help pave the way for progress so fewer will follow this path.

                                                                                                                                                                                                                                                                                                                                                                                                                                                        Thank you for your message.

                                                                                                                                                                                                                                                                                                                                                                                                                                                        Zeus

                                                                                                                                                                                                                                                                                                                                                                                                                                                        Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                        Cindy33
                                                                                                                                                                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                          Charlie,

                                                                                                                                                                                                                                                                                                                                                                                                                                                          You rock. Not stage IV, but have been down some glistening hallways. Love the broken bottle image. Plan to fight like hell and hope to help pave the way for progress so fewer will follow this path.

                                                                                                                                                                                                                                                                                                                                                                                                                                                          Thank you for your message.

                                                                                                                                                                                                                                                                                                                                                                                                                                                          Zeus

                                                                                                                                                                                                                                                                                                                                                                                                                                                          Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                          Miranda
                                                                                                                                                                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                            Hey everyone,

                                                                                                                                                                                                                                                                                                                                                                                                                                                            My husband was just very recently diagnosed with Stage IV Melanoma. Any information at all will be helpful. He is a fighter, thank God! But both of us are terrified beyond words. The doctors are very knowledgeable but we would love to hear from the actual day by day fighters that are on here.

                                                                                                                                                                                                                                                                                                                                                                                                                                                             

                                                                                                                                                                                                                                                                                                                                                                                                                                                            Love and Hope and FIGHT to everyone here!!

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                                                                                                                                                                                                                                                                                                                                                                                                                                                              JerryfromFauq
                                                                                                                                                                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                Miranda, We can do a better Job of providing input for your husbands case if you fill out a profile so that we can get overall and some specific info readily.  Yes, the initial stage IV diagnosis is terrifying.  As is any diagnosis of any cancer, much less Melanoma.  When I went to stage IV about 6 months after my initial Melanoma diagnois, I went home and told my wife that the Stage IV diagnosis at least settled one point for me.  I didn't have to even think about Interferon ass a possibility anymore!, I could at least go on to IL-2 immediately.  At that time (Feb 2007), IL-2 was the only thing that offered any real hope for having a future.  Now days I'm not sure which stage has the worst psychological  impact on one.  There are so many more options at Stage IV now than the "Watch and Wait" usually implimented for Stage III. 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                    While the NED term (No Evidence of Disease on scans) is nice to reach, I have not really ever been there since I was diagnosed with melanoma.  Yes, I still have innumerable tumors seen on my now twice yearly scans, but they are not growing and no new ones have appeared in the last 3 1/2 years!  (Inspite of my wife's comments I will still ride horses.)  Each new grandkid and Greatgrand kids are still welcome joys.  (Especially when they were crying at Mom and start laughing when they see GrandDaddy!) 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                   Much can also be learned by searching and reading our profiles, even if they have not been kept updateded as they should be.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                Miranda
                                                                                                                                                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                  I will have to look at all of the papers again. I'm not sure of all of the terminology yet. What I know as of now is that they are sending a biopsy sample out to be tested if the Mastastasic (spelling?) Melanoma is a mutation since he's only 42. If it is, they want to put him on a pill treatment called Zelboraf to shrink the spots he has. In addition to that, they want to use immunotherapy. They want  to use as little radiation as possible and they don't want to use chemo at all. Has anyone been on/currently on Zelboraf? Is it effective? The docs told us that it's effective almost immediately but it usually stops working in about 6 months. Any suggestions?

                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Miranda
                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                    I will have to look at all of the papers again. I'm not sure of all of the terminology yet. What I know as of now is that they are sending a biopsy sample out to be tested if the Mastastasic (spelling?) Melanoma is a mutation since he's only 42. If it is, they want to put him on a pill treatment called Zelboraf to shrink the spots he has. In addition to that, they want to use immunotherapy. They want  to use as little radiation as possible and they don't want to use chemo at all. Has anyone been on/currently on Zelboraf? Is it effective? The docs told us that it's effective almost immediately but it usually stops working in about 6 months. Any suggestions?

                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Miranda
                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                      I will have to look at all of the papers again. I'm not sure of all of the terminology yet. What I know as of now is that they are sending a biopsy sample out to be tested if the Mastastasic (spelling?) Melanoma is a mutation since he's only 42. If it is, they want to put him on a pill treatment called Zelboraf to shrink the spots he has. In addition to that, they want to use immunotherapy. They want  to use as little radiation as possible and they don't want to use chemo at all. Has anyone been on/currently on Zelboraf? Is it effective? The docs told us that it's effective almost immediately but it usually stops working in about 6 months. Any suggestions?

                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                      JerryfromFauq
                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Miranda, We can do a better Job of providing input for your husbands case if you fill out a profile so that we can get overall and some specific info readily.  Yes, the initial stage IV diagnosis is terrifying.  As is any diagnosis of any cancer, much less Melanoma.  When I went to stage IV about 6 months after my initial Melanoma diagnois, I went home and told my wife that the Stage IV diagnosis at least settled one point for me.  I didn't have to even think about Interferon ass a possibility anymore!, I could at least go on to IL-2 immediately.  At that time (Feb 2007), IL-2 was the only thing that offered any real hope for having a future.  Now days I'm not sure which stage has the worst psychological  impact on one.  There are so many more options at Stage IV now than the "Watch and Wait" usually implimented for Stage III. 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                            While the NED term (No Evidence of Disease on scans) is nice to reach, I have not really ever been there since I was diagnosed with melanoma.  Yes, I still have innumerable tumors seen on my now twice yearly scans, but they are not growing and no new ones have appeared in the last 3 1/2 years!  (Inspite of my wife's comments I will still ride horses.)  Each new grandkid and Greatgrand kids are still welcome joys.  (Especially when they were crying at Mom and start laughing when they see GrandDaddy!) 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                           Much can also be learned by searching and reading our profiles, even if they have not been kept updateded as they should be.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                        JerryfromFauq
                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Miranda, We can do a better Job of providing input for your husbands case if you fill out a profile so that we can get overall and some specific info readily.  Yes, the initial stage IV diagnosis is terrifying.  As is any diagnosis of any cancer, much less Melanoma.  When I went to stage IV about 6 months after my initial Melanoma diagnois, I went home and told my wife that the Stage IV diagnosis at least settled one point for me.  I didn't have to even think about Interferon ass a possibility anymore!, I could at least go on to IL-2 immediately.  At that time (Feb 2007), IL-2 was the only thing that offered any real hope for having a future.  Now days I'm not sure which stage has the worst psychological  impact on one.  There are so many more options at Stage IV now than the "Watch and Wait" usually implimented for Stage III. 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                              While the NED term (No Evidence of Disease on scans) is nice to reach, I have not really ever been there since I was diagnosed with melanoma.  Yes, I still have innumerable tumors seen on my now twice yearly scans, but they are not growing and no new ones have appeared in the last 3 1/2 years!  (Inspite of my wife's comments I will still ride horses.)  Each new grandkid and Greatgrand kids are still welcome joys.  (Especially when they were crying at Mom and start laughing when they see GrandDaddy!) 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                             Much can also be learned by searching and reading our profiles, even if they have not been kept updateded as they should be.

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Miranda
                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Hey everyone,

                                                                                                                                                                                                                                                                                                                                                                                                                                                                          My husband was just very recently diagnosed with Stage IV Melanoma. Any information at all will be helpful. He is a fighter, thank God! But both of us are terrified beyond words. The doctors are very knowledgeable but we would love to hear from the actual day by day fighters that are on here.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Love and Hope and FIGHT to everyone here!!

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Miranda
                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Hey everyone,

                                                                                                                                                                                                                                                                                                                                                                                                                                                                            My husband was just very recently diagnosed with Stage IV Melanoma. Any information at all will be helpful. He is a fighter, thank God! But both of us are terrified beyond words. The doctors are very knowledgeable but we would love to hear from the actual day by day fighters that are on here.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                             

                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Love and Hope and FIGHT to everyone here!!

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Tina D
                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Wow… this was an amazing post to scroll through and read …. I am stg IV since December of 2005. And, yes, thanks be to God, I am Undead :)

                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Thank you, Charlie for calling us out!!!!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Tina 

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Tina D
                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Wow… this was an amazing post to scroll through and read …. I am stg IV since December of 2005. And, yes, thanks be to God, I am Undead :)

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Thank you, Charlie for calling us out!!!!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Tina 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Tina D
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Wow… this was an amazing post to scroll through and read …. I am stg IV since December of 2005. And, yes, thanks be to God, I am Undead :)

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Thank you, Charlie for calling us out!!!!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Tina 

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  SteveBMe
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Was dx'd stage 3, June 1997. Stage 4 since June 1999. NED since February 2004.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    I learned 12/00 that I'd been misdiagnosed in 9/1990.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Just passed my 108 month mark.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    12 more months to reach 120 months.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    I hope you're all still alive. I see where this thread started 2 years, 4 months ago.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Keep living people. Each new day we live– we're one day closer to the cure.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    There's an ancient proverb that says–

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    The spirit of a man will sustain him in his illness. but a wounded spirit, who can bear.

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    SteveBMe
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Was dx'd stage 3, June 1997. Stage 4 since June 1999. NED since February 2004.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      I learned 12/00 that I'd been misdiagnosed in 9/1990.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Just passed my 108 month mark.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      12 more months to reach 120 months.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      I hope you're all still alive. I see where this thread started 2 years, 4 months ago.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Keep living people. Each new day we live– we're one day closer to the cure.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      There's an ancient proverb that says–

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      The spirit of a man will sustain him in his illness. but a wounded spirit, who can bear.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      SteveBMe
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Was dx'd stage 3, June 1997. Stage 4 since June 1999. NED since February 2004.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        I learned 12/00 that I'd been misdiagnosed in 9/1990.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Just passed my 108 month mark.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        12 more months to reach 120 months.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        I hope you're all still alive. I see where this thread started 2 years, 4 months ago.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Keep living people. Each new day we live– we're one day closer to the cure.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        There's an ancient proverb that says–

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        The spirit of a man will sustain him in his illness. but a wounded spirit, who can bear.

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Judy D
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          I am stage IV and I am a survivor! My first diagnosis was in 1997. I am a fighter and I am determined to beat this beast

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Judy D
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            I am stage IV and I am a survivor! My first diagnosis was in 1997. I am a fighter and I am determined to beat this beast

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Judy D
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Participant
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              I am stage IV and I am a survivor! My first diagnosis was in 1997. I am a fighter and I am determined to beat this beast

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Here I am, a bit late on the roll call, but I misted the trumpet you sounded for us to assemble. I am a stage IV warrior doing great…over 2 and a half years from discovery, and in my 27 th month of treatment in the phase II/ I GSK BRAf/MEK trial. if this were a legal case, the trial would be over…it has kicked Mr. Cancer’s ass. The howling wolf coming after me is now a mangy, limping, wound-licking, old and tired quadruped, with a notched ear, torn nut sack, and only one eye still opens. Buzzards are watching him. We are not surrounded by a pack of these bastards anymore.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              We have a bounty on them, and they are going down with the new weapons our genius doctors and researchers have developed.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Go after the brute attacking you….do it with intelligence, and knowledge, and determination. Get a bit of hope and go for it! Thanks Charlie for yor clearing the air of depression because a few of our heroes have fallen. But for the fallen we would not have the hope and the weapons now used to save us. Our gratitude should replace the normal fear that envelops us when we first hear the awful news that we are stage IV. Determination and persistence can win the day…as Charlie has proven for so long.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Here I am, a bit late on the roll call, but I misted the trumpet you sounded for us to assemble. I am a stage IV warrior doing great…over 2 and a half years from discovery, and in my 27 th month of treatment in the phase II/ I GSK BRAf/MEK trial. if this were a legal case, the trial would be over…it has kicked Mr. Cancer’s ass. The howling wolf coming after me is now a mangy, limping, wound-licking, old and tired quadruped, with a notched ear, torn nut sack, and only one eye still opens. Buzzards are watching him. We are not surrounded by a pack of these bastards anymore.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              We have a bounty on them, and they are going down with the new weapons our genius doctors and researchers have developed.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Go after the brute attacking you….do it with intelligence, and knowledge, and determination. Get a bit of hope and go for it! Thanks Charlie for yor clearing the air of depression because a few of our heroes have fallen. But for the fallen we would not have the hope and the weapons now used to save us. Our gratitude should replace the normal fear that envelops us when we first hear the awful news that we are stage IV. Determination and persistence can win the day…as Charlie has proven for so long.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Here I am, a bit late on the roll call, but I misted the trumpet you sounded for us to assemble. I am a stage IV warrior doing great…over 2 and a half years from discovery, and in my 27 th month of treatment in the phase II/ I GSK BRAf/MEK trial. if this were a legal case, the trial would be over…it has kicked Mr. Cancer’s ass. The howling wolf coming after me is now a mangy, limping, wound-licking, old and tired quadruped, with a notched ear, torn nut sack, and only one eye still opens. Buzzards are watching him. We are not surrounded by a pack of these bastards anymore.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              We have a bounty on them, and they are going down with the new weapons our genius doctors and researchers have developed.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Go after the brute attacking you….do it with intelligence, and knowledge, and determination. Get a bit of hope and go for it! Thanks Charlie for yor clearing the air of depression because a few of our heroes have fallen. But for the fallen we would not have the hope and the weapons now used to save us. Our gratitude should replace the normal fear that envelops us when we first hear the awful news that we are stage IV. Determination and persistence can win the day…as Charlie has proven for so long.

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              jamfahey
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Say it loud, say it proud, I am Jim Fahey and I have been Stage 4 since Jan 2011!! My Melanoma is but a small part of me, it does not define me, nor will it consume me. I have a beautiful family, two young boys (13 and 15), and a wonderful wife. I have way too much to live for and way too much to contribute. As long as we are making our world a better place to be in, I believe we deserve to continue to live!! There is only one that decides that my time is up, and I believe that my God has decided otherwise. He has given me the will to live, and I plan on making that happen. Having been a veteran of Melanoma since 2004, I owe it to others to help them through this.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Jim

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                jamfahey
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Say it loud, say it proud, I am Jim Fahey and I have been Stage 4 since Jan 2011!! My Melanoma is but a small part of me, it does not define me, nor will it consume me. I have a beautiful family, two young boys (13 and 15), and a wonderful wife. I have way too much to live for and way too much to contribute. As long as we are making our world a better place to be in, I believe we deserve to continue to live!! There is only one that decides that my time is up, and I believe that my God has decided otherwise. He has given me the will to live, and I plan on making that happen. Having been a veteran of Melanoma since 2004, I owe it to others to help them through this.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Jim

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  jamfahey
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Say it loud, say it proud, I am Jim Fahey and I have been Stage 4 since Jan 2011!! My Melanoma is but a small part of me, it does not define me, nor will it consume me. I have a beautiful family, two young boys (13 and 15), and a wonderful wife. I have way too much to live for and way too much to contribute. As long as we are making our world a better place to be in, I believe we deserve to continue to live!! There is only one that decides that my time is up, and I believe that my God has decided otherwise. He has given me the will to live, and I plan on making that happen. Having been a veteran of Melanoma since 2004, I owe it to others to help them through this.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Jim

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    CherylL
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      My man is Stage 4, and UNDEAD!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Long, long story abbrieviated:

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      2005-Beloved husband diagnosed, Stage 2a. Clean WLE-SNB. Vigilant scans.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      2009-Beloved husband feels a lump. Radical neck dissection. Tumors removed. Multiple positive nodes. Stage 3c.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      2010 (two months later)-Pre-radiation scans reveal two new tumors. Surgical removal. More positive notes. Stage 3c.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      2010: Radiation. Clinical trial. Vigilant scans.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      2012: Very small spots in lungs we had been monitoring showed sudden, small growth. Biopsy reveals melanoma. Stage 4.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      May 2012: Cycle of IL-2 at the amazing UVA with the amazing Dr. Grosh. 15 doses. Post cycle scans show response, smaller tumors.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      August 2012: Cycle 2 of IL-2 at the amazing UVA with the amazing Dr. Grosh. 12 doses. Post cycle scans show stability.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      December 2012: PET scan reveals the numerous lung tumors have NO ACTIVE MELANOMA. No new spots any where. NO EVIDENCE OF DISEASE!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      February 2013: Full body MRI. No new spots. No growth in known spots. NO EVIDENCE OF DISEASE
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      NEVER EVER, EVER GIVE UP!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      We just took our 11-year-old twins (who were FOUR at Daddy's initial diagnosis) to Disney World last week. :)

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      KEEP FIGHTING. KEEP SEEKING OUT TREATMENTS and HAVE BACK-UPS at the ready!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Know that we are lifting all on this board up daily. :)
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      CherylL
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Wife of Stage 4 Melanoma Masher, Scott.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      CherylL
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        My man is Stage 4, and UNDEAD!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Long, long story abbrieviated:

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        2005-Beloved husband diagnosed, Stage 2a. Clean WLE-SNB. Vigilant scans.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        2009-Beloved husband feels a lump. Radical neck dissection. Tumors removed. Multiple positive nodes. Stage 3c.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        2010 (two months later)-Pre-radiation scans reveal two new tumors. Surgical removal. More positive notes. Stage 3c.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        2010: Radiation. Clinical trial. Vigilant scans.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        2012: Very small spots in lungs we had been monitoring showed sudden, small growth. Biopsy reveals melanoma. Stage 4.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        May 2012: Cycle of IL-2 at the amazing UVA with the amazing Dr. Grosh. 15 doses. Post cycle scans show response, smaller tumors.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        August 2012: Cycle 2 of IL-2 at the amazing UVA with the amazing Dr. Grosh. 12 doses. Post cycle scans show stability.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        December 2012: PET scan reveals the numerous lung tumors have NO ACTIVE MELANOMA. No new spots any where. NO EVIDENCE OF DISEASE!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        February 2013: Full body MRI. No new spots. No growth in known spots. NO EVIDENCE OF DISEASE
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        NEVER EVER, EVER GIVE UP!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        We just took our 11-year-old twins (who were FOUR at Daddy's initial diagnosis) to Disney World last week. :)

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        KEEP FIGHTING. KEEP SEEKING OUT TREATMENTS and HAVE BACK-UPS at the ready!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Know that we are lifting all on this board up daily. :)
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        CherylL
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Wife of Stage 4 Melanoma Masher, Scott.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        CherylL
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          My man is Stage 4, and UNDEAD!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Long, long story abbrieviated:

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          2005-Beloved husband diagnosed, Stage 2a. Clean WLE-SNB. Vigilant scans.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          2009-Beloved husband feels a lump. Radical neck dissection. Tumors removed. Multiple positive nodes. Stage 3c.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          2010 (two months later)-Pre-radiation scans reveal two new tumors. Surgical removal. More positive notes. Stage 3c.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          2010: Radiation. Clinical trial. Vigilant scans.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          2012: Very small spots in lungs we had been monitoring showed sudden, small growth. Biopsy reveals melanoma. Stage 4.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          May 2012: Cycle of IL-2 at the amazing UVA with the amazing Dr. Grosh. 15 doses. Post cycle scans show response, smaller tumors.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          August 2012: Cycle 2 of IL-2 at the amazing UVA with the amazing Dr. Grosh. 12 doses. Post cycle scans show stability.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          December 2012: PET scan reveals the numerous lung tumors have NO ACTIVE MELANOMA. No new spots any where. NO EVIDENCE OF DISEASE!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          February 2013: Full body MRI. No new spots. No growth in known spots. NO EVIDENCE OF DISEASE
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          NEVER EVER, EVER GIVE UP!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          We just took our 11-year-old twins (who were FOUR at Daddy's initial diagnosis) to Disney World last week. :)

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          KEEP FIGHTING. KEEP SEEKING OUT TREATMENTS and HAVE BACK-UPS at the ready!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Know that we are lifting all on this board up daily. :)
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          CherylL
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Wife of Stage 4 Melanoma Masher, Scott.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Loading spinner
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          carol b
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            smileyHello everyone, I am righting you all to let you know i am still alive. There is hope. I was DX in Dec 2010 with stage 4 mestatic melanoma. I joined this board soon after. I want to thank you all for all the information that i recieved on here. Me and my husband could not have made it without you. I finished 48 bags of IL2. I was given up to 3 months to live. The only treatment i was given was IL2. It was horrible but i survived it. It  made all my tumors dissapeare except the  baseball sized one under my arm. I had surgery and removed 90% of it. The IL2 is still keeping it at bay. My scans are clear but the Doc says there are microscopic cells that will always be there.  I had 12 rads to that area. The IL2 got rid of the ones on my lungs and my liver and the 6 golf balls i had in my neck above the collar bone.. No futher treatment was needed. March 2012 they founf tumor on the frontal lobe of my brain. Had that removed and 1 high dose of radiation. I have been basically melanoma free for 12 months now. I take it one day at a time. Im just wanting to let you all know that IL2 does work for some. I am a miracle. I am a 28 month survivor.!!! I stalk this page at least once a week. I dont post anything, i leave room for the newbees. Im old news..lol. Just remember there s hope. Never give up. I pray for love, peace happiness and healing for you all.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Thanks for allowing me to be part of your family,

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            I will never forget you,

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Carol b

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            carol b
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              smileyHello everyone, I am righting you all to let you know i am still alive. There is hope. I was DX in Dec 2010 with stage 4 mestatic melanoma. I joined this board soon after. I want to thank you all for all the information that i recieved on here. Me and my husband could not have made it without you. I finished 48 bags of IL2. I was given up to 3 months to live. The only treatment i was given was IL2. It was horrible but i survived it. It  made all my tumors dissapeare except the  baseball sized one under my arm. I had surgery and removed 90% of it. The IL2 is still keeping it at bay. My scans are clear but the Doc says there are microscopic cells that will always be there.  I had 12 rads to that area. The IL2 got rid of the ones on my lungs and my liver and the 6 golf balls i had in my neck above the collar bone.. No futher treatment was needed. March 2012 they founf tumor on the frontal lobe of my brain. Had that removed and 1 high dose of radiation. I have been basically melanoma free for 12 months now. I take it one day at a time. Im just wanting to let you all know that IL2 does work for some. I am a miracle. I am a 28 month survivor.!!! I stalk this page at least once a week. I dont post anything, i leave room for the newbees. Im old news..lol. Just remember there s hope. Never give up. I pray for love, peace happiness and healing for you all.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Thanks for allowing me to be part of your family,

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              I will never forget you,

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Carol b

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              carol b
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                smileyHello everyone, I am righting you all to let you know i am still alive. There is hope. I was DX in Dec 2010 with stage 4 mestatic melanoma. I joined this board soon after. I want to thank you all for all the information that i recieved on here. Me and my husband could not have made it without you. I finished 48 bags of IL2. I was given up to 3 months to live. The only treatment i was given was IL2. It was horrible but i survived it. It  made all my tumors dissapeare except the  baseball sized one under my arm. I had surgery and removed 90% of it. The IL2 is still keeping it at bay. My scans are clear but the Doc says there are microscopic cells that will always be there.  I had 12 rads to that area. The IL2 got rid of the ones on my lungs and my liver and the 6 golf balls i had in my neck above the collar bone.. No futher treatment was needed. March 2012 they founf tumor on the frontal lobe of my brain. Had that removed and 1 high dose of radiation. I have been basically melanoma free for 12 months now. I take it one day at a time. Im just wanting to let you all know that IL2 does work for some. I am a miracle. I am a 28 month survivor.!!! I stalk this page at least once a week. I dont post anything, i leave room for the newbees. Im old news..lol. Just remember there s hope. Never give up. I pray for love, peace happiness and healing for you all.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Thanks for allowing me to be part of your family,

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                I will never forget you,

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Carol b

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                jcmp
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  WOW!  Very happy for you. 

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  jcmp
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    WOW!  Very happy for you. 

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    jcmp
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      WOW!  Very happy for you. 

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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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