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Scared to Death – Stage IV???

Forums General Melanoma Community Scared to Death – Stage IV???

  • Post
    ETF111
    Participant

       

       

      I am the 55 year proud father of two 38 day old twins (yes 38 DAYS old) and belive it or not, my first, but who is now so scared they will never know me. A few weeks ago, I got a spot on my lung detected in a routine Xray but a clean blood work run. A knot on my groin prompted a PET scan that showed "uptake" at two spots : my groin and one on my lung (there were two actually two spots or places in my lung but only one had "uptake"). They did an aspiration on my groin node last Thursday and got an oral report that it was melanoma while I was still on the table––. Having to wait for my doctors to say exactly what it is and stage, but everything I read says it will not only come back melanoma but Stage IV (because of nodes in two places  – no matter size or number of them) and my future is bleak. I've had no signs of symptoms other than a persistent cough for the last 3 months if I laugh hard. No night sweats, fatgue (still swim a half mile almost every other day) and no rapid weight loss (although, I will admit, since this news last week, I've lost 5 pounds but I hope it is due to stress – quite the appetite supressant … as well as this eye sty I just got today).

      I'm the typical fair skinned, bue eyed countless sunburned Florida kid all grown up. I survived Hodgkins 11 years ago (almost exactly 11 years ago) with chemo and radiation and never expected THIS news. I've had several melanomas on the skin but they always said they got them all and they weren't deep.

       

      Anyone else have something like it and is my death as imminent as the studies say?

       

      For the first time in my life I feel I've never had more to live for and never been so unsure of the future.

    Viewing 51 reply threads
    • Replies
        jmmm
        Participant
          Take a deep breath…now is a “good” time to have melanoma:). My 38 year old husband was dx with stage 4 melanoma in January 2011 and was given a 6-9 month prognosis. We have three young boys and thought e same thing. Thanks to 4 surgeries (small bowel resection, thoracotomy, craniotomy and gamma knife) and 2 new medicines…Yervoy and Zelboraf, 19 months later, he is not only alive, but had a scan last month that showed No Evidence of Disease! The first thing to do is to find a melanoma specialist. Do lots of research…Yervoy and Zelboraf are newest and greatest FDA approved treatments and there are many trials available, There are treatments and trials. You’ll see from these boards that melanoma is deadly…there and many widows and widowers who still post, but there are many, many patients posting here 3, 5, 7, and I think I’ve even seen 11 years after a stage 4 diagnosis. Hang in there and learn all you can.
            ETF111
            Participant

              Thank you Jmmm, your husband is encouraging. Just seems so much death and hopeless despair, and I do take comfort in hearing of your family's succes. Congratulations and all the best to you and your wonderful family.

              ETF111
              Participant

                Thank you Jmmm, your husband is encouraging. Just seems so much death and hopeless despair, and I do take comfort in hearing of your family's succes. Congratulations and all the best to you and your wonderful family.

                ETF111
                Participant

                  Thank you Jmmm, your husband is encouraging. Just seems so much death and hopeless despair, and I do take comfort in hearing of your family's succes. Congratulations and all the best to you and your wonderful family.

                jmmm
                Participant
                  Take a deep breath…now is a “good” time to have melanoma:). My 38 year old husband was dx with stage 4 melanoma in January 2011 and was given a 6-9 month prognosis. We have three young boys and thought e same thing. Thanks to 4 surgeries (small bowel resection, thoracotomy, craniotomy and gamma knife) and 2 new medicines…Yervoy and Zelboraf, 19 months later, he is not only alive, but had a scan last month that showed No Evidence of Disease! The first thing to do is to find a melanoma specialist. Do lots of research…Yervoy and Zelboraf are newest and greatest FDA approved treatments and there are many trials available, There are treatments and trials. You’ll see from these boards that melanoma is deadly…there and many widows and widowers who still post, but there are many, many patients posting here 3, 5, 7, and I think I’ve even seen 11 years after a stage 4 diagnosis. Hang in there and learn all you can.
                  jmmm
                  Participant
                    Take a deep breath…now is a “good” time to have melanoma:). My 38 year old husband was dx with stage 4 melanoma in January 2011 and was given a 6-9 month prognosis. We have three young boys and thought e same thing. Thanks to 4 surgeries (small bowel resection, thoracotomy, craniotomy and gamma knife) and 2 new medicines…Yervoy and Zelboraf, 19 months later, he is not only alive, but had a scan last month that showed No Evidence of Disease! The first thing to do is to find a melanoma specialist. Do lots of research…Yervoy and Zelboraf are newest and greatest FDA approved treatments and there are many trials available, There are treatments and trials. You’ll see from these boards that melanoma is deadly…there and many widows and widowers who still post, but there are many, many patients posting here 3, 5, 7, and I think I’ve even seen 11 years after a stage 4 diagnosis. Hang in there and learn all you can.
                    lhaley
                    Participant

                      It is normal to be scared, especially at first.  I was origninally diagnosed in 1979.  Became stage IV in 06!  I am having issues now but for 6 of the years I was doing really well!   We have others on the board that have been stage IV for 20 years!   There are many advances now that they didn't have before.   My advice is to find a melanoma specialist.

                      I realize this was not a good time for them to find melanoma right after your twins were born.  If you do a search on Jag you will find that his son was born a few months ago.  2 years ago he had many tumors and brain mets.  While you are making decisions on what to do search for some of the positive stories.

                      Linda

                        ETF111
                        Participant

                          Thank you so much Linda, I'll find Jag. It is still incredibly scarey (and I feel like a wuss for saying it) but some comfort does come from knowing you're not alone.  I just feel terrible for my family.

                          ETF111
                          Participant

                            Thank you so much Linda, I'll find Jag. It is still incredibly scarey (and I feel like a wuss for saying it) but some comfort does come from knowing you're not alone.  I just feel terrible for my family.

                            ETF111
                            Participant

                              Thank you so much Linda, I'll find Jag. It is still incredibly scarey (and I feel like a wuss for saying it) but some comfort does come from knowing you're not alone.  I just feel terrible for my family.

                            lhaley
                            Participant

                              It is normal to be scared, especially at first.  I was origninally diagnosed in 1979.  Became stage IV in 06!  I am having issues now but for 6 of the years I was doing really well!   We have others on the board that have been stage IV for 20 years!   There are many advances now that they didn't have before.   My advice is to find a melanoma specialist.

                              I realize this was not a good time for them to find melanoma right after your twins were born.  If you do a search on Jag you will find that his son was born a few months ago.  2 years ago he had many tumors and brain mets.  While you are making decisions on what to do search for some of the positive stories.

                              Linda

                              lhaley
                              Participant

                                It is normal to be scared, especially at first.  I was origninally diagnosed in 1979.  Became stage IV in 06!  I am having issues now but for 6 of the years I was doing really well!   We have others on the board that have been stage IV for 20 years!   There are many advances now that they didn't have before.   My advice is to find a melanoma specialist.

                                I realize this was not a good time for them to find melanoma right after your twins were born.  If you do a search on Jag you will find that his son was born a few months ago.  2 years ago he had many tumors and brain mets.  While you are making decisions on what to do search for some of the positive stories.

                                Linda

                                JuleFL
                                Participant
                                  Congratulations on the twins ! It is possible that your lung spots are some other condition since you have had a cough. My husband’s recurrence was discovered by an X-ray for his ribs and back that showed a spot on his lung and he had no coughing or other related symptoms.

                                  Pet scans are not very precise. Please get full lab reports on your groin node and see if they can do testing for mutations; these can be used to determine which treatment would be beneficial. I think it is important to get some facts and put things into perspective. You do have options. Search “NED” on this board and you will read many positive posts.

                                  Keep up the swimming and enjoy those babies!

                                  Jule

                                    ETF111
                                    Participant

                                      Thank you, Julie, and what do you mean by mutations? They did an apiration last thursday (Sept. the 6th), and said it looked like melanoma and not Hodgkins. Said the edges were smooth and it's a good sign but I have no idea why it would be. No one has mentioned mutations so I'll research them. My wife is almsot inconsolable. With two little boys and both of us waiting so lng and not being married for even two years, she's thinking our wonderful life is about over. Thank you again.

                                      ETF111
                                      Participant

                                        Thank you, Julie, and what do you mean by mutations? They did an apiration last thursday (Sept. the 6th), and said it looked like melanoma and not Hodgkins. Said the edges were smooth and it's a good sign but I have no idea why it would be. No one has mentioned mutations so I'll research them. My wife is almsot inconsolable. With two little boys and both of us waiting so lng and not being married for even two years, she's thinking our wonderful life is about over. Thank you again.

                                        ETF111
                                        Participant

                                          Thank you, Julie, and what do you mean by mutations? They did an apiration last thursday (Sept. the 6th), and said it looked like melanoma and not Hodgkins. Said the edges were smooth and it's a good sign but I have no idea why it would be. No one has mentioned mutations so I'll research them. My wife is almsot inconsolable. With two little boys and both of us waiting so lng and not being married for even two years, she's thinking our wonderful life is about over. Thank you again.

                                        JuleFL
                                        Participant
                                          Congratulations on the twins ! It is possible that your lung spots are some other condition since you have had a cough. My husband’s recurrence was discovered by an X-ray for his ribs and back that showed a spot on his lung and he had no coughing or other related symptoms.

                                          Pet scans are not very precise. Please get full lab reports on your groin node and see if they can do testing for mutations; these can be used to determine which treatment would be beneficial. I think it is important to get some facts and put things into perspective. You do have options. Search “NED” on this board and you will read many positive posts.

                                          Keep up the swimming and enjoy those babies!

                                          Jule

                                          JuleFL
                                          Participant
                                            Congratulations on the twins ! It is possible that your lung spots are some other condition since you have had a cough. My husband’s recurrence was discovered by an X-ray for his ribs and back that showed a spot on his lung and he had no coughing or other related symptoms.

                                            Pet scans are not very precise. Please get full lab reports on your groin node and see if they can do testing for mutations; these can be used to determine which treatment would be beneficial. I think it is important to get some facts and put things into perspective. You do have options. Search “NED” on this board and you will read many positive posts.

                                            Keep up the swimming and enjoy those babies!

                                            Jule

                                            Tina D
                                            Participant

                                               

                                              First of all, congratulations on the new little additions to your family!

                                              I am sure this is incredibly distressing for you and your wife. I am also a previous Floridian who spent many many many of my growing up years on the East coast beach. As you wait for further news from the Dr, I just want to offer some tangible encouragement. I had an amelanotic ( non-pigmented & aggressive) melanoma mole removed in 2002. In 2005 I had my first distant metasasis ( way down in the muscle of my left calf). Our youngest was 2 when I was 1st diagnosed and is now 13 ๐Ÿ™‚  . Statistics can be so frightening. SO… here I am 10 years after mole removed, and 7 yrs after first metastasis. I have had recurrances, but I am alive and well with a recent clean PET scan. My suggestion to you is to research only to the extent you need to in order to ask intelligent & informed questions of your Drs…. but leave it at that. Then, once you have more info from your Dr, you can begin to make decisions. You will find many very helpful and compassionae folks on this board. They can offer advice abt treatment centers near you, and about the various treatmen decisions. I know I have seen some in FL who go to Moffat. I am sorry you are having to endure this sress and I will be praying for you and your family in the days to come.

                                              Tina D

                                                ETF111
                                                Participant

                                                  Thank you all SO much. Honestly, I am not as concerned as not being able to see my children grow up as I fear I have been selfish or will end up being unfair to them by not being here for them or my wife. (How has everyone kept their jobs and income during all these treatement? They seem so time consuming and all inclusive of your time?)

                                                  Everyone's words of encouragement make me feel better even if it is just not feeling so alone.

                                                  Searching the NED rsults IS comforting, too.

                                                  Time to fight!

                                                  Thank you all and for the suggestions and good luck to you all in your own battles.

                                                  awillett1991
                                                  Participant
                                                    It never seems to be a good time to get cancer! Look for a recent post by Charlie S – he’s a long term stage 4 survivor. It’s great.

                                                    It’s not easy but I believe the more you educate yourself, the better chance you will have. Melanoma mortality statistics are outdated and there are some intriguing new anti-pd1 clinical trials just getting getting to start recruiting so start reading up on those and find a good Mel specialist.

                                                    ETF111
                                                    Participant

                                                      Awillett1991 How in the WORLD you can offer encouragment with all you have been through but definitely a story to show keep on fighting. Gez! What you have been through AND congrats on you scans of the other day. You are a true Super Hero.

                                                       

                                                      Good for you my friend, so happy for you and thank YOU!!!

                                                      ETF111
                                                      Participant

                                                        Awillett1991 How in the WORLD you can offer encouragment with all you have been through but definitely a story to show keep on fighting. Gez! What you have been through AND congrats on you scans of the other day. You are a true Super Hero.

                                                         

                                                        Good for you my friend, so happy for you and thank YOU!!!

                                                        ETF111
                                                        Participant

                                                          Awillett1991 How in the WORLD you can offer encouragment with all you have been through but definitely a story to show keep on fighting. Gez! What you have been through AND congrats on you scans of the other day. You are a true Super Hero.

                                                           

                                                          Good for you my friend, so happy for you and thank YOU!!!

                                                          awillett1991
                                                          Participant
                                                            It never seems to be a good time to get cancer! Look for a recent post by Charlie S – he’s a long term stage 4 survivor. It’s great.

                                                            It’s not easy but I believe the more you educate yourself, the better chance you will have. Melanoma mortality statistics are outdated and there are some intriguing new anti-pd1 clinical trials just getting getting to start recruiting so start reading up on those and find a good Mel specialist.

                                                            awillett1991
                                                            Participant
                                                              It never seems to be a good time to get cancer! Look for a recent post by Charlie S – he’s a long term stage 4 survivor. It’s great.

                                                              It’s not easy but I believe the more you educate yourself, the better chance you will have. Melanoma mortality statistics are outdated and there are some intriguing new anti-pd1 clinical trials just getting getting to start recruiting so start reading up on those and find a good Mel specialist.

                                                              ETF111
                                                              Participant

                                                                Thank you all SO much. Honestly, I am not as concerned as not being able to see my children grow up as I fear I have been selfish or will end up being unfair to them by not being here for them or my wife. (How has everyone kept their jobs and income during all these treatement? They seem so time consuming and all inclusive of your time?)

                                                                Everyone's words of encouragement make me feel better even if it is just not feeling so alone.

                                                                Searching the NED rsults IS comforting, too.

                                                                Time to fight!

                                                                Thank you all and for the suggestions and good luck to you all in your own battles.

                                                                ETF111
                                                                Participant

                                                                  Thank you all SO much. Honestly, I am not as concerned as not being able to see my children grow up as I fear I have been selfish or will end up being unfair to them by not being here for them or my wife. (How has everyone kept their jobs and income during all these treatement? They seem so time consuming and all inclusive of your time?)

                                                                  Everyone's words of encouragement make me feel better even if it is just not feeling so alone.

                                                                  Searching the NED rsults IS comforting, too.

                                                                  Time to fight!

                                                                  Thank you all and for the suggestions and good luck to you all in your own battles.

                                                                Tina D
                                                                Participant

                                                                   

                                                                  First of all, congratulations on the new little additions to your family!

                                                                  I am sure this is incredibly distressing for you and your wife. I am also a previous Floridian who spent many many many of my growing up years on the East coast beach. As you wait for further news from the Dr, I just want to offer some tangible encouragement. I had an amelanotic ( non-pigmented & aggressive) melanoma mole removed in 2002. In 2005 I had my first distant metasasis ( way down in the muscle of my left calf). Our youngest was 2 when I was 1st diagnosed and is now 13 ๐Ÿ™‚  . Statistics can be so frightening. SO… here I am 10 years after mole removed, and 7 yrs after first metastasis. I have had recurrances, but I am alive and well with a recent clean PET scan. My suggestion to you is to research only to the extent you need to in order to ask intelligent & informed questions of your Drs…. but leave it at that. Then, once you have more info from your Dr, you can begin to make decisions. You will find many very helpful and compassionae folks on this board. They can offer advice abt treatment centers near you, and about the various treatmen decisions. I know I have seen some in FL who go to Moffat. I am sorry you are having to endure this sress and I will be praying for you and your family in the days to come.

                                                                  Tina D

                                                                  Tina D
                                                                  Participant

                                                                     

                                                                    First of all, congratulations on the new little additions to your family!

                                                                    I am sure this is incredibly distressing for you and your wife. I am also a previous Floridian who spent many many many of my growing up years on the East coast beach. As you wait for further news from the Dr, I just want to offer some tangible encouragement. I had an amelanotic ( non-pigmented & aggressive) melanoma mole removed in 2002. In 2005 I had my first distant metasasis ( way down in the muscle of my left calf). Our youngest was 2 when I was 1st diagnosed and is now 13 ๐Ÿ™‚  . Statistics can be so frightening. SO… here I am 10 years after mole removed, and 7 yrs after first metastasis. I have had recurrances, but I am alive and well with a recent clean PET scan. My suggestion to you is to research only to the extent you need to in order to ask intelligent & informed questions of your Drs…. but leave it at that. Then, once you have more info from your Dr, you can begin to make decisions. You will find many very helpful and compassionae folks on this board. They can offer advice abt treatment centers near you, and about the various treatmen decisions. I know I have seen some in FL who go to Moffat. I am sorry you are having to endure this sress and I will be praying for you and your family in the days to come.

                                                                    Tina D

                                                                    aldakota22
                                                                    Participant

                                                                      This disease is very scary.It is just in the last few years that melanoma victims now have a fighting chance .Do not over worry.That alone will steal time you need for your family.I beleive that it is no longer a death sentence.So many advances are in the pipeline.Having a melanoma specialist  is of the utmost priority.Will keep you in my prayers..Beat the Beast.   Al

                                                                      aldakota22
                                                                      Participant

                                                                        This disease is very scary.It is just in the last few years that melanoma victims now have a fighting chance .Do not over worry.That alone will steal time you need for your family.I beleive that it is no longer a death sentence.So many advances are in the pipeline.Having a melanoma specialist  is of the utmost priority.Will keep you in my prayers..Beat the Beast.   Al

                                                                        aldakota22
                                                                        Participant

                                                                          This disease is very scary.It is just in the last few years that melanoma victims now have a fighting chance .Do not over worry.That alone will steal time you need for your family.I beleive that it is no longer a death sentence.So many advances are in the pipeline.Having a melanoma specialist  is of the utmost priority.Will keep you in my prayers..Beat the Beast.   Al

                                                                          Lori C
                                                                          Participant

                                                                            The best thing you can do is come to this board for great advice and education – you found the board very early and will have a huge advantage as a result.  There are lots of options and though it s of course scary, remember that "statistics" do not have a lot of meaning in individual cases.  There ARE people who survive stage IV long term and there is no reason you won't be one of them.

                                                                             

                                                                            Lori, caregiver to Will

                                                                            Lori C
                                                                            Participant

                                                                              The best thing you can do is come to this board for great advice and education – you found the board very early and will have a huge advantage as a result.  There are lots of options and though it s of course scary, remember that "statistics" do not have a lot of meaning in individual cases.  There ARE people who survive stage IV long term and there is no reason you won't be one of them.

                                                                               

                                                                              Lori, caregiver to Will

                                                                                ETF111
                                                                                Participant

                                                                                  Thank you, Lori, and I do hope WIll is doing well.

                                                                                  ETF111
                                                                                  Participant

                                                                                    Thank you, Lori, and I do hope WIll is doing well.

                                                                                    ETF111
                                                                                    Participant

                                                                                      Thank you, Lori, and I do hope WIll is doing well.

                                                                                    Lori C
                                                                                    Participant

                                                                                      The best thing you can do is come to this board for great advice and education – you found the board very early and will have a huge advantage as a result.  There are lots of options and though it s of course scary, remember that "statistics" do not have a lot of meaning in individual cases.  There ARE people who survive stage IV long term and there is no reason you won't be one of them.

                                                                                       

                                                                                      Lori, caregiver to Will

                                                                                      Rocco
                                                                                      Participant
                                                                                        Clinical Trial ParticipantNED

                                                                                        Sorry to hear that you've joined our club, but welcome to the group!  This site is a great place to gain knowledge, meet others going through similar circumstances and ask questions.  In the early days it was truly my lifeline.  My one suggestion would be to make sure you're being seen by a melanoma specialist.  It makes a difference.I was diagnosed with melanoma of unknown primary at Stage IV in 2005 and I'm still here.   

                                                                                        I've been blessed with an immune system that is aiding in my fight, having few if any symptoms most of the time, cutting edge trial treatments that worked for me, a great team of melanoma specialists and a job with great medical benefits and vacation time.  My personal choice was to tell only a handful of people at work over the years.  In order to hang onto the job and benefits I've worked through all my treatments with the exception of IL-2 when I had to take 6 weeks off on short term disability.  I tried when ever possible to schedule doctor appointments, surgeries, radiation treatments, trial treatments and scans around my work schedule.  Most doctor and trial treatments (outpatient) I've been able to schedule at 7 or 7:30 AM, scans on Saturdays early am, surgeries I took vacation days, etc all to minimize sick time out of the office.  It was important to me, helped me to feel somewhat in control and though not easy during some treatments-  I pulled it off.  As you work your way through this battle you'll find a rythm to what works for you, your family and your medical team and what you're capable of handling. 

                                                                                        Over 7+ years out from my Stage IV diagnosis and I've been NED for the past 3 + years.  Hang in there! 

                                                                                        Rocco – IV since 2005, MDX-010 (ipi/yervoy) responder since 2009

                                                                                          ETF111
                                                                                          Participant

                                                                                            Thank you Rocco and you certainly are one of THE rock stars in this battle. Wow, what an inspiration. I needed to know something about the work schedule too. I'm in a business that if my competitors find out what I've got they wouldn't hesitate to swoop in and take my business. It gives me hope. Thank you so much and as I learn more, I'll post it Hopefully, get more inofrmation today and good or bad, at least I'll know more. Thank you, again, Ellis

                                                                                            ETF111
                                                                                            Participant

                                                                                              Thank you Rocco and you certainly are one of THE rock stars in this battle. Wow, what an inspiration. I needed to know something about the work schedule too. I'm in a business that if my competitors find out what I've got they wouldn't hesitate to swoop in and take my business. It gives me hope. Thank you so much and as I learn more, I'll post it Hopefully, get more inofrmation today and good or bad, at least I'll know more. Thank you, again, Ellis

                                                                                              ETF111
                                                                                              Participant

                                                                                                Thank you Rocco and you certainly are one of THE rock stars in this battle. Wow, what an inspiration. I needed to know something about the work schedule too. I'm in a business that if my competitors find out what I've got they wouldn't hesitate to swoop in and take my business. It gives me hope. Thank you so much and as I learn more, I'll post it Hopefully, get more inofrmation today and good or bad, at least I'll know more. Thank you, again, Ellis

                                                                                              Rocco
                                                                                              Participant
                                                                                                Clinical Trial ParticipantNED

                                                                                                Sorry to hear that you've joined our club, but welcome to the group!  This site is a great place to gain knowledge, meet others going through similar circumstances and ask questions.  In the early days it was truly my lifeline.  My one suggestion would be to make sure you're being seen by a melanoma specialist.  It makes a difference.I was diagnosed with melanoma of unknown primary at Stage IV in 2005 and I'm still here.   

                                                                                                I've been blessed with an immune system that is aiding in my fight, having few if any symptoms most of the time, cutting edge trial treatments that worked for me, a great team of melanoma specialists and a job with great medical benefits and vacation time.  My personal choice was to tell only a handful of people at work over the years.  In order to hang onto the job and benefits I've worked through all my treatments with the exception of IL-2 when I had to take 6 weeks off on short term disability.  I tried when ever possible to schedule doctor appointments, surgeries, radiation treatments, trial treatments and scans around my work schedule.  Most doctor and trial treatments (outpatient) I've been able to schedule at 7 or 7:30 AM, scans on Saturdays early am, surgeries I took vacation days, etc all to minimize sick time out of the office.  It was important to me, helped me to feel somewhat in control and though not easy during some treatments-  I pulled it off.  As you work your way through this battle you'll find a rythm to what works for you, your family and your medical team and what you're capable of handling. 

                                                                                                Over 7+ years out from my Stage IV diagnosis and I've been NED for the past 3 + years.  Hang in there! 

                                                                                                Rocco – IV since 2005, MDX-010 (ipi/yervoy) responder since 2009

                                                                                                Rocco
                                                                                                Participant
                                                                                                  Clinical Trial ParticipantNED

                                                                                                  Sorry to hear that you've joined our club, but welcome to the group!  This site is a great place to gain knowledge, meet others going through similar circumstances and ask questions.  In the early days it was truly my lifeline.  My one suggestion would be to make sure you're being seen by a melanoma specialist.  It makes a difference.I was diagnosed with melanoma of unknown primary at Stage IV in 2005 and I'm still here.   

                                                                                                  I've been blessed with an immune system that is aiding in my fight, having few if any symptoms most of the time, cutting edge trial treatments that worked for me, a great team of melanoma specialists and a job with great medical benefits and vacation time.  My personal choice was to tell only a handful of people at work over the years.  In order to hang onto the job and benefits I've worked through all my treatments with the exception of IL-2 when I had to take 6 weeks off on short term disability.  I tried when ever possible to schedule doctor appointments, surgeries, radiation treatments, trial treatments and scans around my work schedule.  Most doctor and trial treatments (outpatient) I've been able to schedule at 7 or 7:30 AM, scans on Saturdays early am, surgeries I took vacation days, etc all to minimize sick time out of the office.  It was important to me, helped me to feel somewhat in control and though not easy during some treatments-  I pulled it off.  As you work your way through this battle you'll find a rythm to what works for you, your family and your medical team and what you're capable of handling. 

                                                                                                  Over 7+ years out from my Stage IV diagnosis and I've been NED for the past 3 + years.  Hang in there! 

                                                                                                  Rocco – IV since 2005, MDX-010 (ipi/yervoy) responder since 2009

                                                                                                  LynnLuc
                                                                                                  Participant

                                                                                                    Nope! I was diagnosed in June 2009 with stage 4 melanoma…mine was at the top of my lug area…kissing my superior vena cava. I was given 6-9 months….I have been NED ( no evidence at all of disease) for 2 years and 5 months…had scans last wednesday ( I am in the anti pd-1 trial at Moffitt) and I remain NED! Not even close to death!

                                                                                                    LynnLuc
                                                                                                    Participant

                                                                                                      Nope! I was diagnosed in June 2009 with stage 4 melanoma…mine was at the top of my lug area…kissing my superior vena cava. I was given 6-9 months….I have been NED ( no evidence at all of disease) for 2 years and 5 months…had scans last wednesday ( I am in the anti pd-1 trial at Moffitt) and I remain NED! Not even close to death!

                                                                                                      LynnLuc
                                                                                                      Participant

                                                                                                        Nope! I was diagnosed in June 2009 with stage 4 melanoma…mine was at the top of my lug area…kissing my superior vena cava. I was given 6-9 months….I have been NED ( no evidence at all of disease) for 2 years and 5 months…had scans last wednesday ( I am in the anti pd-1 trial at Moffitt) and I remain NED! Not even close to death!

                                                                                                        mlbjab
                                                                                                        Participant

                                                                                                          I am sorry you are going through this.  It sounds as if you have been through quite a few health scares.  Maybe I ask how many other melanomas you had, and what stages they were?  Also, I did read at a time that lymphoma and melanoma may share link. 

                                                                                                            ETF111
                                                                                                            Participant

                                                                                                              I've probably had 6-7 skin melanomas taken off and have always been told they were superficial and not to worry aout them, they got all of them! I believved them Apparently, Hodgkins was a "cake walk" compared to what is going to be involved now.

                                                                                                              ETF111
                                                                                                              Participant

                                                                                                                I've probably had 6-7 skin melanomas taken off and have always been told they were superficial and not to worry aout them, they got all of them! I believved them Apparently, Hodgkins was a "cake walk" compared to what is going to be involved now.

                                                                                                                ETF111
                                                                                                                Participant

                                                                                                                  I've probably had 6-7 skin melanomas taken off and have always been told they were superficial and not to worry aout them, they got all of them! I believved them Apparently, Hodgkins was a "cake walk" compared to what is going to be involved now.

                                                                                                                mlbjab
                                                                                                                Participant

                                                                                                                  I am sorry you are going through this.  It sounds as if you have been through quite a few health scares.  Maybe I ask how many other melanomas you had, and what stages they were?  Also, I did read at a time that lymphoma and melanoma may share link. 

                                                                                                                  mlbjab
                                                                                                                  Participant

                                                                                                                    I am sorry you are going through this.  It sounds as if you have been through quite a few health scares.  Maybe I ask how many other melanomas you had, and what stages they were?  Also, I did read at a time that lymphoma and melanoma may share link. 

                                                                                                                    serenade8
                                                                                                                    Participant

                                                                                                                      I know this time is difficult because of the waiting.  But getting a correct diagnosis is key to getting the appropriate treatment.  Mutation studies will allow the doctors to narrow down the most effective treatment for you.  Doctors have boards available to them so that they can use the research, experience, and histories to help your case.  Stay positive and push the doctors to find those avenues.  They have a network and the US has wonderful centers for cancer treatment and also clinical studies.  Huntsman Cancer Institute and MD Anderson are two that I know about.  Together they have diagnosed and are currently treating my daughter with Interleuken-2 at Huntsman in Utah.  This week is the PET scan where we find out how effective it has been.  Carry on and remember that formula of faith is to hold on, work on, and see it through.  Bless you and your wonderful family!!

                                                                                                                        ETF111
                                                                                                                        Participant

                                                                                                                          I can't begin to tell you how timely your words were last night. Just about the time my wife and I are going nuts (Biopsy last Thursday and STILL no defintielve word of how bad it is) we read your words and the need to give them time to get the diagnosis right. Thank you very much!

                                                                                                                          ETF111
                                                                                                                          Participant

                                                                                                                            I can't begin to tell you how timely your words were last night. Just about the time my wife and I are going nuts (Biopsy last Thursday and STILL no defintielve word of how bad it is) we read your words and the need to give them time to get the diagnosis right. Thank you very much!

                                                                                                                            ETF111
                                                                                                                            Participant

                                                                                                                              I can't begin to tell you how timely your words were last night. Just about the time my wife and I are going nuts (Biopsy last Thursday and STILL no defintielve word of how bad it is) we read your words and the need to give them time to get the diagnosis right. Thank you very much!

                                                                                                                            serenade8
                                                                                                                            Participant

                                                                                                                              I know this time is difficult because of the waiting.  But getting a correct diagnosis is key to getting the appropriate treatment.  Mutation studies will allow the doctors to narrow down the most effective treatment for you.  Doctors have boards available to them so that they can use the research, experience, and histories to help your case.  Stay positive and push the doctors to find those avenues.  They have a network and the US has wonderful centers for cancer treatment and also clinical studies.  Huntsman Cancer Institute and MD Anderson are two that I know about.  Together they have diagnosed and are currently treating my daughter with Interleuken-2 at Huntsman in Utah.  This week is the PET scan where we find out how effective it has been.  Carry on and remember that formula of faith is to hold on, work on, and see it through.  Bless you and your wonderful family!!

                                                                                                                              serenade8
                                                                                                                              Participant

                                                                                                                                I know this time is difficult because of the waiting.  But getting a correct diagnosis is key to getting the appropriate treatment.  Mutation studies will allow the doctors to narrow down the most effective treatment for you.  Doctors have boards available to them so that they can use the research, experience, and histories to help your case.  Stay positive and push the doctors to find those avenues.  They have a network and the US has wonderful centers for cancer treatment and also clinical studies.  Huntsman Cancer Institute and MD Anderson are two that I know about.  Together they have diagnosed and are currently treating my daughter with Interleuken-2 at Huntsman in Utah.  This week is the PET scan where we find out how effective it has been.  Carry on and remember that formula of faith is to hold on, work on, and see it through.  Bless you and your wonderful family!!

                                                                                                                                ETF111
                                                                                                                                Participant

                                                                                                                                  Someone sent me a note with a background from Alabama and I accidntally deleted it ( thought I could find it on this post but can't). If this note gets back to that person, please resend.  I went to Troy Sate, lived in Montgomery for a while and did a post graduate degree in Birmingham! Thank you, Ellis

                                                                                                                                  ETF111
                                                                                                                                  Participant

                                                                                                                                    Someone sent me a note with a background from Alabama and I accidntally deleted it ( thought I could find it on this post but can't). If this note gets back to that person, please resend.  I went to Troy Sate, lived in Montgomery for a while and did a post graduate degree in Birmingham! Thank you, Ellis

                                                                                                                                    ETF111
                                                                                                                                    Participant

                                                                                                                                      Someone sent me a note with a background from Alabama and I accidntally deleted it ( thought I could find it on this post but can't). If this note gets back to that person, please resend.  I went to Troy Sate, lived in Montgomery for a while and did a post graduate degree in Birmingham! Thank you, Ellis

                                                                                                                                      JerryfromFauq
                                                                                                                                      Participant

                                                                                                                                        Hello young Florida Boy,  (I also grew up in Fla.  My family has been in Fla since the 1830's.)  I am a dark haired, dark skined, brown eyed boy that didn't burn even in the Florida sun (seldom wore a shirt)  Who knows why mel hits some and not others! 

                                                                                                                                            I had questions along the lines of yours in 2007 when I was given 2 to 6 months asprojected to live  after 3 1/2 years of being mis-diagnosed!.  I have been stage IV, without being NED since at least Feb 2007.  Is my death as imminent as the studies say?  Good question.  I still have that question, but it has not been my most pressing worry all the time since then.  You are welcome to read my profile and see my history.  I still don't know if Melanoma will get me in the end.  A horse accident did kill me in 2010, and the NICU wanted to transplant my organs (MELANOMA ORGANS?)!!!!  But I came back and still am not afraid of neither the sun nor horses.  Got to see some grand  kids grow up and even see a great grandkid come into the world.

                                                                                                                                             Statistics are for masses, not for individuals.  I don't know when nor what I will die from, but I am going to enjoy life as much as possible for as long as I can. 

                                                                                                                                             Now is the best time so far in histsory to have a melanoma diagnosis, though not as good as it will be in a few more years.  Each day wwe live, the more likely we are to see success against melanoma.

                                                                                                                                             Look at the onco-proteins and DNA mutations that your tumors might have and look at the main approved treatments (IL-2, Yervoy, Zelborf) and at the trials, especially the Anti PD-1 trials. (There are other chemo treatments that work on a very low peercentage of people as well.    As our Charlie says "work the problem".  He has been working the problem at the active stage Iv level for 16 years now.

                                                                                                                                             My main advice to Stage IV people is to make sure our spouses learn what then need to learn to live without us, and then to work the problem to  keep them from having to use what they have learned!

                                                                                                                                          JerryfromFauq
                                                                                                                                          Participant

                                                                                                                                            PS   Be sure you get to a Melanoma specialiast.  There is so much going on in the melanomaa world that even a melanoma specialist Oncologist cannot keep on top of everything, but aat l east they are closer than a general oncologist to knowing the most about this fast moving field.   Get copies of all your paperwork, tests, reports, etdc and keep them./

                                                                                                                                            ETF111
                                                                                                                                            Participant

                                                                                                                                              Thank you so much. These words are VERY comforting if for no other reason to know we aren't alone. I am checking in to Moffitt tomorrow am. We'll see what words of driection they have in mind! Thank you, again, Ellis

                                                                                                                                              ETF111
                                                                                                                                              Participant

                                                                                                                                                Thank you so much. These words are VERY comforting if for no other reason to know we aren't alone. I am checking in to Moffitt tomorrow am. We'll see what words of driection they have in mind! Thank you, again, Ellis

                                                                                                                                                ETF111
                                                                                                                                                Participant

                                                                                                                                                  Thank you so much. These words are VERY comforting if for no other reason to know we aren't alone. I am checking in to Moffitt tomorrow am. We'll see what words of driection they have in mind! Thank you, again, Ellis

                                                                                                                                                  JerryfromFauq
                                                                                                                                                  Participant

                                                                                                                                                    PS   Be sure you get to a Melanoma specialiast.  There is so much going on in the melanomaa world that even a melanoma specialist Oncologist cannot keep on top of everything, but aat l east they are closer than a general oncologist to knowing the most about this fast moving field.   Get copies of all your paperwork, tests, reports, etdc and keep them./

                                                                                                                                                    JerryfromFauq
                                                                                                                                                    Participant

                                                                                                                                                      PS   Be sure you get to a Melanoma specialiast.  There is so much going on in the melanomaa world that even a melanoma specialist Oncologist cannot keep on top of everything, but aat l east they are closer than a general oncologist to knowing the most about this fast moving field.   Get copies of all your paperwork, tests, reports, etdc and keep them./

                                                                                                                                                    JerryfromFauq
                                                                                                                                                    Participant

                                                                                                                                                      Hello young Florida Boy,  (I also grew up in Fla.  My family has been in Fla since the 1830's.)  I am a dark haired, dark skined, brown eyed boy that didn't burn even in the Florida sun (seldom wore a shirt)  Who knows why mel hits some and not others! 

                                                                                                                                                          I had questions along the lines of yours in 2007 when I was given 2 to 6 months asprojected to live  after 3 1/2 years of being mis-diagnosed!.  I have been stage IV, without being NED since at least Feb 2007.  Is my death as imminent as the studies say?  Good question.  I still have that question, but it has not been my most pressing worry all the time since then.  You are welcome to read my profile and see my history.  I still don't know if Melanoma will get me in the end.  A horse accident did kill me in 2010, and the NICU wanted to transplant my organs (MELANOMA ORGANS?)!!!!  But I came back and still am not afraid of neither the sun nor horses.  Got to see some grand  kids grow up and even see a great grandkid come into the world.

                                                                                                                                                           Statistics are for masses, not for individuals.  I don't know when nor what I will die from, but I am going to enjoy life as much as possible for as long as I can. 

                                                                                                                                                           Now is the best time so far in histsory to have a melanoma diagnosis, though not as good as it will be in a few more years.  Each day wwe live, the more likely we are to see success against melanoma.

                                                                                                                                                           Look at the onco-proteins and DNA mutations that your tumors might have and look at the main approved treatments (IL-2, Yervoy, Zelborf) and at the trials, especially the Anti PD-1 trials. (There are other chemo treatments that work on a very low peercentage of people as well.    As our Charlie says "work the problem".  He has been working the problem at the active stage Iv level for 16 years now.

                                                                                                                                                           My main advice to Stage IV people is to make sure our spouses learn what then need to learn to live without us, and then to work the problem to  keep them from having to use what they have learned!

                                                                                                                                                      JerryfromFauq
                                                                                                                                                      Participant

                                                                                                                                                        Hello young Florida Boy,  (I also grew up in Fla.  My family has been in Fla since the 1830's.)  I am a dark haired, dark skined, brown eyed boy that didn't burn even in the Florida sun (seldom wore a shirt)  Who knows why mel hits some and not others! 

                                                                                                                                                            I had questions along the lines of yours in 2007 when I was given 2 to 6 months asprojected to live  after 3 1/2 years of being mis-diagnosed!.  I have been stage IV, without being NED since at least Feb 2007.  Is my death as imminent as the studies say?  Good question.  I still have that question, but it has not been my most pressing worry all the time since then.  You are welcome to read my profile and see my history.  I still don't know if Melanoma will get me in the end.  A horse accident did kill me in 2010, and the NICU wanted to transplant my organs (MELANOMA ORGANS?)!!!!  But I came back and still am not afraid of neither the sun nor horses.  Got to see some grand  kids grow up and even see a great grandkid come into the world.

                                                                                                                                                             Statistics are for masses, not for individuals.  I don't know when nor what I will die from, but I am going to enjoy life as much as possible for as long as I can. 

                                                                                                                                                             Now is the best time so far in histsory to have a melanoma diagnosis, though not as good as it will be in a few more years.  Each day wwe live, the more likely we are to see success against melanoma.

                                                                                                                                                             Look at the onco-proteins and DNA mutations that your tumors might have and look at the main approved treatments (IL-2, Yervoy, Zelborf) and at the trials, especially the Anti PD-1 trials. (There are other chemo treatments that work on a very low peercentage of people as well.    As our Charlie says "work the problem".  He has been working the problem at the active stage Iv level for 16 years now.

                                                                                                                                                             My main advice to Stage IV people is to make sure our spouses learn what then need to learn to live without us, and then to work the problem to  keep them from having to use what they have learned!

                                                                                                                                                        LuckyMan51
                                                                                                                                                        Participant
                                                                                                                                                          Buddy….Reading your post was like looking in the mirror… You are far from dead but naturally in full freak mode given this unpleasant reality that’s been forced upon you. Good news is you have found out what you have, thie number of spots is manageable and there are some great groundbreaking therapies available. After a few Melanoma spots were removed 10 yrs ago I thought I was on easy street. Had a routine scan after a blood infection 1.5 years ago and Dr’s found a lung Met which turned out to be melanoma. Cut it out with surgery through my side. Wasnt that bad. Felt like I took a good beating but couple of weeks later felt good. 6 mos after during 2nd series of follow up scans a brain met was found. Dr Jed Wolchuk from MSK in NYC started me on Yervoy and we had the Cyber Knife type radiation beam non invasive procedure done between either the 2-3 or 3-4 treatment. Just had my 1st follow up scans, body and brain and no evidence of disease (NED). Look into the Anti PD-1 trials also. I couldn’t get that one because I had the brain Met but hearing some great things about it. Keep calm, stay focused, enjoy the workouts and when you start to freak say a prayer listing at the things you are thankful for …Wife, beautiful healthy children, everything.. There isn’t enough room for the fear in your head anymore . Make sure you get a Melanoma Oncologist Specialist vs general Oncologist. Some great Dr’s available.. Get on top of this fast, learn about the options and partner with a great Quarterback/Dr and you got a good shot around fr a long time. Kiss the wife and kids and enjoy being a Dad.
                                                                                                                                                            ETF111
                                                                                                                                                            Participant

                                                                                                                                                              I looked at your profile and am so glad you NEED to update it. Brain AND body NED from your recent scans? CONGRTULATIONS. (A word I sure look forward to using one day.) What was your recovery time like from the lung surgery? Of all things, I just satrted a horn band about a year ago and we're finally at the point we're booking gigs, and wouldn't you know it, in addition to my family's suffering concerns and now theirs, you just feel like you're letting a bunch of people down and starting unecessary trouble for everyone. How is your breathing these days?

                                                                                                                                                               

                                                                                                                                                              Thank you so much for writing me. I look forward to hearing more. It means more than you know .. or maybe you do.

                                                                                                                                                               

                                                                                                                                                              Eliis

                                                                                                                                                              ETF111
                                                                                                                                                              Participant

                                                                                                                                                                I looked at your profile and am so glad you NEED to update it. Brain AND body NED from your recent scans? CONGRTULATIONS. (A word I sure look forward to using one day.) What was your recovery time like from the lung surgery? Of all things, I just satrted a horn band about a year ago and we're finally at the point we're booking gigs, and wouldn't you know it, in addition to my family's suffering concerns and now theirs, you just feel like you're letting a bunch of people down and starting unecessary trouble for everyone. How is your breathing these days?

                                                                                                                                                                 

                                                                                                                                                                Thank you so much for writing me. I look forward to hearing more. It means more than you know .. or maybe you do.

                                                                                                                                                                 

                                                                                                                                                                Eliis

                                                                                                                                                                LuckyMan51
                                                                                                                                                                Participant
                                                                                                                                                                  I had the surgery August 2011. I was in hospital for 2 nights following the procedure. The only unpleasant part was when they removed the post surgical drainage tube going into my side . That was a pretty brutal ripping feeling but it lasted about 30 seconds. I really wasn’t in a lot of pain just very sore like getting hit with an airbag in a car crash type feeling. They give you a plastic device u blow in and try to hold a little ball up to expand your lungs back out. I was in hospital the 2 nights and then was home for 5 days chilling out. I felt exponentially better every day. It really wasn’t too bad (and certainly not bad given the alternative) and I think I read that surgical solutions are still the highest probability of getting cancer out as a first option. I’d bet that practicing your horn a bit, once your Doc gives you clearance, would get you back in blowing shape pretty fast..jMy breathing is absolutely great. I feel great. Sort of crazy. I definitely say my thanks for things I am blessed with and it keeps me on even keel as you can’t worry about things you can’t control. You just keep it together and react to what comes your way. Do you homework, follow which trials are underway, be an educated patient, stay focused on your family. Do some reading on Anti PD 1, Ippy/Yervoy, Gene Therapy. Some cool stuff coming out. Good luck…
                                                                                                                                                                  LuckyMan51
                                                                                                                                                                  Participant
                                                                                                                                                                    I had the surgery August 2011. I was in hospital for 2 nights following the procedure. The only unpleasant part was when they removed the post surgical drainage tube going into my side . That was a pretty brutal ripping feeling but it lasted about 30 seconds. I really wasn’t in a lot of pain just very sore like getting hit with an airbag in a car crash type feeling. They give you a plastic device u blow in and try to hold a little ball up to expand your lungs back out. I was in hospital the 2 nights and then was home for 5 days chilling out. I felt exponentially better every day. It really wasn’t too bad (and certainly not bad given the alternative) and I think I read that surgical solutions are still the highest probability of getting cancer out as a first option. I’d bet that practicing your horn a bit, once your Doc gives you clearance, would get you back in blowing shape pretty fast..jMy breathing is absolutely great. I feel great. Sort of crazy. I definitely say my thanks for things I am blessed with and it keeps me on even keel as you can’t worry about things you can’t control. You just keep it together and react to what comes your way. Do you homework, follow which trials are underway, be an educated patient, stay focused on your family. Do some reading on Anti PD 1, Ippy/Yervoy, Gene Therapy. Some cool stuff coming out. Good luck…
                                                                                                                                                                    ETF111
                                                                                                                                                                    Participant

                                                                                                                                                                      Well, my wife and I had our first meeting at Moffitt today. To say it was less than encouraging would be wrong.

                                                                                                                                                                       

                                                                                                                                                                      Hopefully, they were just giving us the "doom and gloom" speech for legal reasons. (Being a lawyer, it is what I was telling my wife … who is now inconsolable.)

                                                                                                                                                                       

                                                                                                                                                                      We were told of the 6-9 month life expectancy. Because I've got mestatic involvement in more than one place it is Stage IV and surgical removal would not be beneficial (chances of recurrence during the surgery and healng period would waste time in treatment and we'd probably see a recurrence during that time anyway). Met with the surgeon and he was able to "guess" where it started on my leg (about 2 1/2 years ago, and interestingly, the plastic surgeon who removed it said I should get a sentinal node biopsy and the oncologist we followed-up with said no, it's not going to be melanoma! Lesson learned.).

                                                                                                                                                                       

                                                                                                                                                                      They now need a brain MRI to see if any lesions there and he's expecting to see them. Then we need a needle biopsy of the two spots on my lungs with one being about 2cm at its widest spot (one showed uptake on the PET and the other didn't which, according to Dr., means it's just so big it wouldn't show it). Last they'll get the path reports and tissue samples from the biopsy and see if it's the BRAF mutation (?).

                                                                                                                                                                       

                                                                                                                                                                      Maybe he just assumed with my background or something, I can handle more or my wife can. Not the best of bedside manners, but then again, they can't sit down with each patient and cry about having twins less than 60 days ago who will never know me. they wouldn't get anything acomplished if they did.

                                                                                                                                                                       

                                                                                                                                                                      Is our "introduction" to what the future holds typical? I just think I ought to be exeriencing something horrble or feeling really bad if it's going to truly be the doom and gloom result.

                                                                                                                                                                       

                                                                                                                                                                      Then I read of the grat stories of you all and wonder, did you all get this kind of a talk, too???

                                                                                                                                                                      Linny
                                                                                                                                                                      Participant

                                                                                                                                                                        Wow, your experience was similar to my first visit to Johns Hopkins. Talking to the dermatologist in their melanoma center was like talking to the grim reaper. I already knew I had melanoma after my local surgeon had broken the news to me. Long story, short, I have an unknown primary. The purpose of seeing the dermatologist at Hopkins was to have him and his team go over me with a fine toothed comb and if they found anything suspicious, they were going to remove it. Well, they found nothing and the CAT scan I'd had done at my local hospital at the order of my surgeon was clean and clear.

                                                                                                                                                                        OK, so thanks to my brother having sent me a copy of a study, I knew that having an unknown primary was not necessarily a bad thing. And I figured that having a clean CAT scan may not be a bad thing, either. At least I had those two things in my favor but to what end, I wasn't sure.

                                                                                                                                                                        After my exam was finished the surgeon told me I had stage III melanoma. I forget if it was B or C because my mind was in a bit of a fog. After he finished telling me that the only approved treatment was Interferon and that is was very rough, the medical study about unknown primaries didn't mean anything, and that the clean CAT scan didn't mean anything, and that Hopkins had no clinical trials for stage III melanoma, he asked me if I wanted to know my prognosis. I told him, "NO WAY!".

                                                                                                                                                                        I was scheduled to see a surgeon at Hopkins that day too. She was the complete opposite of this guy. She corroborated the study my brother had sent me, explained that Hopkins had have several clinical trials happening and that once my surgery was complete the oncologist would discuss them with me if I qualified and was interested, and that the clean scan was a VERY good thing. But even that was not enough to undo the emotional trauma from my visit with the dermatologist.

                                                                                                                                                                        BTW, all this took place December 2010, about 3-4 days before Christmas and about a week before my birthday.

                                                                                                                                                                        My surgery went great. No more melanoma was found. It was only in one lymph node that had been removed earlier. And yes, I did wind up qualifying for a clinical trial. CAT scans have all been clean so far and I pray to God they stay that way.

                                                                                                                                                                         

                                                                                                                                                                        .

                                                                                                                                                                        Linny
                                                                                                                                                                        Participant

                                                                                                                                                                          Wow, your experience was similar to my first visit to Johns Hopkins. Talking to the dermatologist in their melanoma center was like talking to the grim reaper. I already knew I had melanoma after my local surgeon had broken the news to me. Long story, short, I have an unknown primary. The purpose of seeing the dermatologist at Hopkins was to have him and his team go over me with a fine toothed comb and if they found anything suspicious, they were going to remove it. Well, they found nothing and the CAT scan I'd had done at my local hospital at the order of my surgeon was clean and clear.

                                                                                                                                                                          OK, so thanks to my brother having sent me a copy of a study, I knew that having an unknown primary was not necessarily a bad thing. And I figured that having a clean CAT scan may not be a bad thing, either. At least I had those two things in my favor but to what end, I wasn't sure.

                                                                                                                                                                          After my exam was finished the surgeon told me I had stage III melanoma. I forget if it was B or C because my mind was in a bit of a fog. After he finished telling me that the only approved treatment was Interferon and that is was very rough, the medical study about unknown primaries didn't mean anything, and that the clean CAT scan didn't mean anything, and that Hopkins had no clinical trials for stage III melanoma, he asked me if I wanted to know my prognosis. I told him, "NO WAY!".

                                                                                                                                                                          I was scheduled to see a surgeon at Hopkins that day too. She was the complete opposite of this guy. She corroborated the study my brother had sent me, explained that Hopkins had have several clinical trials happening and that once my surgery was complete the oncologist would discuss them with me if I qualified and was interested, and that the clean scan was a VERY good thing. But even that was not enough to undo the emotional trauma from my visit with the dermatologist.

                                                                                                                                                                          BTW, all this took place December 2010, about 3-4 days before Christmas and about a week before my birthday.

                                                                                                                                                                          My surgery went great. No more melanoma was found. It was only in one lymph node that had been removed earlier. And yes, I did wind up qualifying for a clinical trial. CAT scans have all been clean so far and I pray to God they stay that way.

                                                                                                                                                                           

                                                                                                                                                                          .

                                                                                                                                                                          Linny
                                                                                                                                                                          Participant

                                                                                                                                                                            I screwed up my post and can't re-edit it. Both surgeons were awesome! It was the dermatologist (not either of the surgeons) who was the one that told me I had stage III melanoma and then proceeded to be the grim reaper.

                                                                                                                                                                            ETF111
                                                                                                                                                                            Participant

                                                                                                                                                                              It's time for an UPDATE!

                                                                                                                                                                              First, and foremost, I'm still here.

                                                                                                                                                                              Even more important, my twin little boys are just over 1 year old now (and their birthday was somrething I was originally told I would not see … 6 days after they were born). (I know I know, waiting until I was 55 to start having children is crazy .. and I wouldn't have it any other way.)

                                                                                                                                                                              Tomorrow, I go in for surgery to remove what is now suspected to be the last … little … place left in me the Stage IV metastatic melanoma might be hiding out. I'm almost guilty in saying I seem to have had one of the exceptional results to Yervoy as what had once spread to my lungs and then brain is now gone. In fact, I was told last year surgery was not even an optoin as it was too wide spread, the surgery would be too invasive and I'd spend my last few days of life in recovery.

                                                                                                                                                                              Now, they're taking the exact opposite approach.

                                                                                                                                                                              As most of you may know, once you get the diagnosis, you go back every 90 days in hopes it is not spreading – what my wife and I now call a "hall pass" for another 90 days of life. Imagine our surpise and delight when last time, they said I'd be around for years .. even said "20". They've now done 10 different biopsies trying to find any remnants of it, and I think they're taking the groin lymph nodes out more for assurance than a belief there really is any left or that it is active.

                                                                                                                                                                               

                                                                                                                                                                              To Dr. Gibney, Pat Henderson, Drs. Rao and Etame at Moffitt in Tampa, I literally owe my life to them.

                                                                                                                                                                              The thoughts, kind words and prayers from all of you here have been valuable beyond expression. My gratitude is incapable of being fairly expressed.

                                                                                                                                                                              I will post more after the surgery tomorrow.

                                                                                                                                                                              Please … in the for "whatever it is worth" category … let those who have been given this "death sentence" know it isn't always so. For a year, I've been holding my little ones wondering how many more hugs with them I would ever have and knowing they would never remeber me. Now we're "re-adjusting" to me becoming a more futristic thinking family member.

                                                                                                                                                                              Through it all, though, I have refused to accept the diagnosis. I have remainded active, worked out, kept working … have still hidden the diagnosis from my Mother, Father and brother and sister.

                                                                                                                                                                              I know there are no studies showing one's outlook can affect the outcome … but … I also know money for research is so scarce, they haven't DONE any such studies, either.

                                                                                                                                                                              Refuse to accept, do what you can to keep the rest of your body and mind as healthy as possible and give the sick part of your body some help …

                                                                                                                                                                              I ain't saying it will help … but I sure don't belive it will hurt.

                                                                                                                                                                              Bless you all and more to come soon ….

                                                                                                                                                                               

                                                                                                                                                                              Ellis

                                                                                                                                                                              ETF111
                                                                                                                                                                              Participant

                                                                                                                                                                                It's time for an UPDATE!

                                                                                                                                                                                First, and foremost, I'm still here.

                                                                                                                                                                                Even more important, my twin little boys are just over 1 year old now (and their birthday was somrething I was originally told I would not see … 6 days after they were born). (I know I know, waiting until I was 55 to start having children is crazy .. and I wouldn't have it any other way.)

                                                                                                                                                                                Tomorrow, I go in for surgery to remove what is now suspected to be the last … little … place left in me the Stage IV metastatic melanoma might be hiding out. I'm almost guilty in saying I seem to have had one of the exceptional results to Yervoy as what had once spread to my lungs and then brain is now gone. In fact, I was told last year surgery was not even an optoin as it was too wide spread, the surgery would be too invasive and I'd spend my last few days of life in recovery.

                                                                                                                                                                                Now, they're taking the exact opposite approach.

                                                                                                                                                                                As most of you may know, once you get the diagnosis, you go back every 90 days in hopes it is not spreading – what my wife and I now call a "hall pass" for another 90 days of life. Imagine our surpise and delight when last time, they said I'd be around for years .. even said "20". They've now done 10 different biopsies trying to find any remnants of it, and I think they're taking the groin lymph nodes out more for assurance than a belief there really is any left or that it is active.

                                                                                                                                                                                 

                                                                                                                                                                                To Dr. Gibney, Pat Henderson, Drs. Rao and Etame at Moffitt in Tampa, I literally owe my life to them.

                                                                                                                                                                                The thoughts, kind words and prayers from all of you here have been valuable beyond expression. My gratitude is incapable of being fairly expressed.

                                                                                                                                                                                I will post more after the surgery tomorrow.

                                                                                                                                                                                Please … in the for "whatever it is worth" category … let those who have been given this "death sentence" know it isn't always so. For a year, I've been holding my little ones wondering how many more hugs with them I would ever have and knowing they would never remeber me. Now we're "re-adjusting" to me becoming a more futristic thinking family member.

                                                                                                                                                                                Through it all, though, I have refused to accept the diagnosis. I have remainded active, worked out, kept working … have still hidden the diagnosis from my Mother, Father and brother and sister.

                                                                                                                                                                                I know there are no studies showing one's outlook can affect the outcome … but … I also know money for research is so scarce, they haven't DONE any such studies, either.

                                                                                                                                                                                Refuse to accept, do what you can to keep the rest of your body and mind as healthy as possible and give the sick part of your body some help …

                                                                                                                                                                                I ain't saying it will help … but I sure don't belive it will hurt.

                                                                                                                                                                                Bless you all and more to come soon ….

                                                                                                                                                                                 

                                                                                                                                                                                Ellis

                                                                                                                                                                                POW
                                                                                                                                                                                Participant

                                                                                                                                                                                  Oh, Ellis! Thank you so much for coming back here to share your good news! I can't believe that after such a dire prognosis originally you are now or are about to be NED. You give such hope to your fellow melanoma sufferers. Drs. Gibney and Etame treated my brother and I agree, they are both tops. 

                                                                                                                                                                                  May you continue to really enjoy your family day-by-day and may you be here to celebrate many, many more birthdays (and graduations and weddings and …).

                                                                                                                                                                                   

                                                                                                                                                                                  POW
                                                                                                                                                                                  Participant

                                                                                                                                                                                    Oh, Ellis! Thank you so much for coming back here to share your good news! I can't believe that after such a dire prognosis originally you are now or are about to be NED. You give such hope to your fellow melanoma sufferers. Drs. Gibney and Etame treated my brother and I agree, they are both tops. 

                                                                                                                                                                                    May you continue to really enjoy your family day-by-day and may you be here to celebrate many, many more birthdays (and graduations and weddings and …).

                                                                                                                                                                                     

                                                                                                                                                                                    POW
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Oh, Ellis! Thank you so much for coming back here to share your good news! I can't believe that after such a dire prognosis originally you are now or are about to be NED. You give such hope to your fellow melanoma sufferers. Drs. Gibney and Etame treated my brother and I agree, they are both tops. 

                                                                                                                                                                                      May you continue to really enjoy your family day-by-day and may you be here to celebrate many, many more birthdays (and graduations and weddings and …).

                                                                                                                                                                                       

                                                                                                                                                                                      LuckyMan51
                                                                                                                                                                                      Participant
                                                                                                                                                                                        Ellis, This is tremendous news. I smiled when I saw the Sept 18 2013 date you had scheduled. Just one day earlier on the 17th I had the last melanoma tumor removed from my body/brain. This past year was undoubtably a mind blower for you but I was thrilled to see just what you have pulled of. Congratulations on your results to date as they are inspiration to all.. I wish you a speedy recovery from this last procure. All the best.
                                                                                                                                                                                        Pam S.
                                                                                                                                                                                        Participant

                                                                                                                                                                                          My husband (60yrs) dx stage 4 end of Nov was in his small intestine, lung and brain. Have had 3 gamma knifes -last MRI -only 4 tumors left (out of 9) . Has 3 tumors removed from small intestine in Dec-took him a long to recover was going to go back to work Feb 3. Then he had multiple seizures on Jan 27–scared me to death-took few weeks to get over this too. So no work. In March SOB and 2 bronchoscopies. Tumor in RLL one bronchus cleared-the othe main bronchus tumor is very hard. Having 10 days lung radiation. Meanwhile found 1 vertebrea fractured and will do kyphoplasty to put cement in the spine- cancer not in spinal cord at this point. Also will need some radiation on the spine. Also found mets in 1 rib and possibly on the liver and adrenal gland. Will have pet scan on Thurs. Am scared to death–dont know what to do-he is having such a rough time with fatigue-no energy-forgeting things-no appetite-he just want it to end. I am afraid with all this radiation he will never feel good again. I almost forgot will have bracyy therapy for 3 wks for his lung..Anyone had similar experience ? any advice- we have great DRs at UPMC/Hillman Cancer Center. I need someone to talk to that is going thru this. All family and friends smpathize offer help but they dont understand-I am tired of questions and the "im sorries"    Just need to someone in the same boat–I dont think my husband has a lot of time and i feel helpless………Thanks to anyone who can espond.

                                                                                                                                                                                          Pam S.
                                                                                                                                                                                          Participant

                                                                                                                                                                                            My husband (60yrs) dx stage 4 end of Nov was in his small intestine, lung and brain. Have had 3 gamma knifes -last MRI -only 4 tumors left (out of 9) . Has 3 tumors removed from small intestine in Dec-took him a long to recover was going to go back to work Feb 3. Then he had multiple seizures on Jan 27–scared me to death-took few weeks to get over this too. So no work. In March SOB and 2 bronchoscopies. Tumor in RLL one bronchus cleared-the othe main bronchus tumor is very hard. Having 10 days lung radiation. Meanwhile found 1 vertebrea fractured and will do kyphoplasty to put cement in the spine- cancer not in spinal cord at this point. Also will need some radiation on the spine. Also found mets in 1 rib and possibly on the liver and adrenal gland. Will have pet scan on Thurs. Am scared to death–dont know what to do-he is having such a rough time with fatigue-no energy-forgeting things-no appetite-he just want it to end. I am afraid with all this radiation he will never feel good again. I almost forgot will have bracyy therapy for 3 wks for his lung..Anyone had similar experience ? any advice- we have great DRs at UPMC/Hillman Cancer Center. I need someone to talk to that is going thru this. All family and friends smpathize offer help but they dont understand-I am tired of questions and the "im sorries"    Just need to someone in the same boat–I dont think my husband has a lot of time and i feel helpless………Thanks to anyone who can espond.

                                                                                                                                                                                            Amy Ingram
                                                                                                                                                                                            Participant

                                                                                                                                                                                              Hi Pam, my husband was diagnosed in April this year. He has 5 brain mets and liver, small intestine and adrenal gland mets. One of the bowel mets caused an obstruction and he has had bowel surgery which he is struggling to recover from. He had whole brain radiation but the doctors say there is nothing else they can do as he is BRAF negative. I don't know why he hasn't been offered Yervoy. He is 57 and they just told him to go have some fun and put his affairs in order!  I don't know if I can offer anything that would help you with your journey but be assured you are not the only ones on this trip! Good luck and stay strong. Amy

                                                                                                                                                                                              Amy Ingram
                                                                                                                                                                                              Participant

                                                                                                                                                                                                Hi Pam, my husband was diagnosed in April this year. He has 5 brain mets and liver, small intestine and adrenal gland mets. One of the bowel mets caused an obstruction and he has had bowel surgery which he is struggling to recover from. He had whole brain radiation but the doctors say there is nothing else they can do as he is BRAF negative. I don't know why he hasn't been offered Yervoy. He is 57 and they just told him to go have some fun and put his affairs in order!  I don't know if I can offer anything that would help you with your journey but be assured you are not the only ones on this trip! Good luck and stay strong. Amy

                                                                                                                                                                                                Amy Ingram
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  Hi Pam, my husband was diagnosed in April this year. He has 5 brain mets and liver, small intestine and adrenal gland mets. One of the bowel mets caused an obstruction and he has had bowel surgery which he is struggling to recover from. He had whole brain radiation but the doctors say there is nothing else they can do as he is BRAF negative. I don't know why he hasn't been offered Yervoy. He is 57 and they just told him to go have some fun and put his affairs in order!  I don't know if I can offer anything that would help you with your journey but be assured you are not the only ones on this trip! Good luck and stay strong. Amy

                                                                                                                                                                                                  Pam S.
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                    My husband (60yrs) dx stage 4 end of Nov was in his small intestine, lung and brain. Have had 3 gamma knifes -last MRI -only 4 tumors left (out of 9) . Has 3 tumors removed from small intestine in Dec-took him a long to recover was going to go back to work Feb 3. Then he had multiple seizures on Jan 27–scared me to death-took few weeks to get over this too. So no work. In March SOB and 2 bronchoscopies. Tumor in RLL one bronchus cleared-the othe main bronchus tumor is very hard. Having 10 days lung radiation. Meanwhile found 1 vertebrea fractured and will do kyphoplasty to put cement in the spine- cancer not in spinal cord at this point. Also will need some radiation on the spine. Also found mets in 1 rib and possibly on the liver and adrenal gland. Will have pet scan on Thurs. Am scared to death–dont know what to do-he is having such a rough time with fatigue-no energy-forgeting things-no appetite-he just want it to end. I am afraid with all this radiation he will never feel good again. I almost forgot will have bracyy therapy for 3 wks for his lung..Anyone had similar experience ? any advice- we have great DRs at UPMC/Hillman Cancer Center. I need someone to talk to that is going thru this. All family and friends smpathize offer help but they dont understand-I am tired of questions and the "im sorries"    Just need to someone in the same boat–I dont think my husband has a lot of time and i feel helpless………Thanks to anyone who can espond.

                                                                                                                                                                                                    LuckyMan51
                                                                                                                                                                                                    Participant
                                                                                                                                                                                                      Ellis, This is tremendous news. I smiled when I saw the Sept 18 2013 date you had scheduled. Just one day earlier on the 17th I had the last melanoma tumor removed from my body/brain. This past year was undoubtably a mind blower for you but I was thrilled to see just what you have pulled of. Congratulations on your results to date as they are inspiration to all.. I wish you a speedy recovery from this last procure. All the best.
                                                                                                                                                                                                      LuckyMan51
                                                                                                                                                                                                      Participant
                                                                                                                                                                                                        Ellis, This is tremendous news. I smiled when I saw the Sept 18 2013 date you had scheduled. Just one day earlier on the 17th I had the last melanoma tumor removed from my body/brain. This past year was undoubtably a mind blower for you but I was thrilled to see just what you have pulled of. Congratulations on your results to date as they are inspiration to all.. I wish you a speedy recovery from this last procure. All the best.
                                                                                                                                                                                                        fabfour424
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          Hi, Ellis!  I've been reading your story.  It's 2016 now, and I am wondering how you and the twins are doing!

                                                                                                                                                                                                          fabfour424
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            Hi, Ellis!  I've been reading your story.  It's 2016 now, and I am wondering how you and the twins are doing!

                                                                                                                                                                                                            fabfour424
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              Hi, Ellis!  I've been reading your story.  It's 2016 now, and I am wondering how you and the twins are doing!

                                                                                                                                                                                                              fabfour424
                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                Hi, Ellis!  Any new updates about you and the twins in 2016?

                                                                                                                                                                                                                fabfour424
                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                  Hi, Ellis!  Any new updates about you and the twins in 2016?

                                                                                                                                                                                                                  fabfour424
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    Hi, Ellis!  Any new updates about you and the twins in 2016?

                                                                                                                                                                                                                    ETF111
                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                      It's time for an UPDATE!

                                                                                                                                                                                                                      First, and foremost, I'm still here.

                                                                                                                                                                                                                      Even more important, my twin little boys are just over 1 year old now (and their birthday was somrething I was originally told I would not see … 6 days after they were born). (I know I know, waiting until I was 55 to start having children is crazy .. and I wouldn't have it any other way.)

                                                                                                                                                                                                                      Tomorrow, I go in for surgery to remove what is now suspected to be the last … little … place left in me the Stage IV metastatic melanoma might be hiding out. I'm almost guilty in saying I seem to have had one of the exceptional results to Yervoy as what had once spread to my lungs and then brain is now gone. In fact, I was told last year surgery was not even an optoin as it was too wide spread, the surgery would be too invasive and I'd spend my last few days of life in recovery.

                                                                                                                                                                                                                      Now, they're taking the exact opposite approach.

                                                                                                                                                                                                                      As most of you may know, once you get the diagnosis, you go back every 90 days in hopes it is not spreading – what my wife and I now call a "hall pass" for another 90 days of life. Imagine our surpise and delight when last time, they said I'd be around for years .. even said "20". They've now done 10 different biopsies trying to find any remnants of it, and I think they're taking the groin lymph nodes out more for assurance than a belief there really is any left or that it is active.

                                                                                                                                                                                                                       

                                                                                                                                                                                                                      To Dr. Gibney, Pat Henderson, Drs. Rao and Etame at Moffitt in Tampa, I literally owe my life to them.

                                                                                                                                                                                                                      The thoughts, kind words and prayers from all of you here have been valuable beyond expression. My gratitude is incapable of being fairly expressed.

                                                                                                                                                                                                                      I will post more after the surgery tomorrow.

                                                                                                                                                                                                                      Please … in the for "whatever it is worth" category … let those who have been given this "death sentence" know it isn't always so. For a year, I've been holding my little ones wondering how many more hugs with them I would ever have and knowing they would never remeber me. Now we're "re-adjusting" to me becoming a more futristic thinking family member.

                                                                                                                                                                                                                      Through it all, though, I have refused to accept the diagnosis. I have remainded active, worked out, kept working … have still hidden the diagnosis from my Mother, Father and brother and sister.

                                                                                                                                                                                                                      I know there are no studies showing one's outlook can affect the outcome … but … I also know money for research is so scarce, they haven't DONE any such studies, either.

                                                                                                                                                                                                                      Refuse to accept, do what you can to keep the rest of your body and mind as healthy as possible and give the sick part of your body some help …

                                                                                                                                                                                                                      I ain't saying it will help … but I sure don't belive it will hurt.

                                                                                                                                                                                                                      Bless you all and more to come soon ….

                                                                                                                                                                                                                       

                                                                                                                                                                                                                      Ellis

                                                                                                                                                                                                                      Linny
                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                        I screwed up my post and can't re-edit it. Both surgeons were awesome! It was the dermatologist (not either of the surgeons) who was the one that told me I had stage III melanoma and then proceeded to be the grim reaper.

                                                                                                                                                                                                                        Linny
                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                          I screwed up my post and can't re-edit it. Both surgeons were awesome! It was the dermatologist (not either of the surgeons) who was the one that told me I had stage III melanoma and then proceeded to be the grim reaper.

                                                                                                                                                                                                                          Linny
                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                            Wow, your experience was similar to my first visit to Johns Hopkins. Talking to the dermatologist in their melanoma center was like talking to the grim reaper. I already knew I had melanoma after my local surgeon had broken the news to me. Long story, short, I have an unknown primary. The purpose of seeing the dermatologist at Hopkins was to have him and his team go over me with a fine toothed comb and if they found anything suspicious, they were going to remove it. Well, they found nothing and the CAT scan I'd had done at my local hospital at the order of my surgeon was clean and clear.

                                                                                                                                                                                                                            OK, so thanks to my brother having sent me a copy of a study, I knew that having an unknown primary was not necessarily a bad thing. And I figured that having a clean CAT scan may not be a bad thing, either. At least I had those two things in my favor but to what end, I wasn't sure.

                                                                                                                                                                                                                            After my exam was finished the surgeon told me I had stage III melanoma. I forget if it was B or C because my mind was in a bit of a fog. After he finished telling me that the only approved treatment was Interferon and that is was very rough, the medical study about unknown primaries didn't mean anything, and that the clean CAT scan didn't mean anything, and that Hopkins had no clinical trials for stage III melanoma, he asked me if I wanted to know my prognosis. I told him, "NO WAY!".

                                                                                                                                                                                                                            I was scheduled to see a surgeon at Hopkins that day too. She was the complete opposite of this guy. She corroborated the study my brother had sent me, explained that Hopkins had have several clinical trials happening and that once my surgery was complete the oncologist would discuss them with me if I qualified and was interested, and that the clean scan was a VERY good thing. But even that was not enough to undo the emotional trauma from my visit with the dermatologist.

                                                                                                                                                                                                                            BTW, all this took place December 2010, about 3-4 days before Christmas and about a week before my birthday.

                                                                                                                                                                                                                            My surgery went great. No more melanoma was found. It was only in one lymph node that had been removed earlier. And yes, I did wind up qualifying for a clinical trial. CAT scans have all been clean so far and I pray to God they stay that way.

                                                                                                                                                                                                                             

                                                                                                                                                                                                                            .

                                                                                                                                                                                                                            Tina D
                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                              Yep, very similar visit,  back in 2005…SEVEN years ago. It is very daunting and discouraging and frightening. Also, had the appointment where they were expecting to find brain mets ( none showed up). Take it one step at a time. The BRAF mutation they mentioned… if you have that particular mutation, there are a couple of recently approved treatments that would be available for either now, or later on. I am on one of those, and started treatment with numerous Mets ( including in my pancreas) after 3 months on the drug, my PET scans came back clear, we thank the Lord for that most every day. The treatment of melanoma is now a rapidly evolving thing with new advances being made regularly. For years there were no viable options available , but that is changing.

                                                                                                                                                                                                                              So sorry this appointment was horrible, we certainly have had several such appointments. Thank God, I am still here to talk anout it, though. No one is a statistic.

                                                                                                                                                                                                                              Prayers for you and your precious wife and little ones today.

                                                                                                                                                                                                                              Tina

                                                                                                                                                                                                                              Tina D
                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                Yep, very similar visit,  back in 2005…SEVEN years ago. It is very daunting and discouraging and frightening. Also, had the appointment where they were expecting to find brain mets ( none showed up). Take it one step at a time. The BRAF mutation they mentioned… if you have that particular mutation, there are a couple of recently approved treatments that would be available for either now, or later on. I am on one of those, and started treatment with numerous Mets ( including in my pancreas) after 3 months on the drug, my PET scans came back clear, we thank the Lord for that most every day. The treatment of melanoma is now a rapidly evolving thing with new advances being made regularly. For years there were no viable options available , but that is changing.

                                                                                                                                                                                                                                So sorry this appointment was horrible, we certainly have had several such appointments. Thank God, I am still here to talk anout it, though. No one is a statistic.

                                                                                                                                                                                                                                Prayers for you and your precious wife and little ones today.

                                                                                                                                                                                                                                Tina

                                                                                                                                                                                                                                Tina D
                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                  Yep, very similar visit,  back in 2005…SEVEN years ago. It is very daunting and discouraging and frightening. Also, had the appointment where they were expecting to find brain mets ( none showed up). Take it one step at a time. The BRAF mutation they mentioned… if you have that particular mutation, there are a couple of recently approved treatments that would be available for either now, or later on. I am on one of those, and started treatment with numerous Mets ( including in my pancreas) after 3 months on the drug, my PET scans came back clear, we thank the Lord for that most every day. The treatment of melanoma is now a rapidly evolving thing with new advances being made regularly. For years there were no viable options available , but that is changing.

                                                                                                                                                                                                                                  So sorry this appointment was horrible, we certainly have had several such appointments. Thank God, I am still here to talk anout it, though. No one is a statistic.

                                                                                                                                                                                                                                  Prayers for you and your precious wife and little ones today.

                                                                                                                                                                                                                                  Tina

                                                                                                                                                                                                                                  ETF111
                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                    We LOVE reading these stories (although, and at least right now, no matter how many my wife reads, she's still upset!). I was hoping everyone hears the same "pitch" we did. I'm still dizzy over it today … and of course, I'm now thinking my confusion is a sign of brain metastasis!!! It makes you think of giving up before you start! Yet, as I was trying to tell everyone last night, I'd like to at least START the fight before I admit defeat … which I don't plan on doing easily. Were you Stage IV? Did they do a surgery? I was told not to do a surgery as it really wouldn't be a good use of time.

                                                                                                                                                                                                                                     

                                                                                                                                                                                                                                    Thank you, again, Tina, and I hope you're doing as well now as you seem to be.

                                                                                                                                                                                                                                     

                                                                                                                                                                                                                                    Ellis

                                                                                                                                                                                                                                    ETF111
                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                      We LOVE reading these stories (although, and at least right now, no matter how many my wife reads, she's still upset!). I was hoping everyone hears the same "pitch" we did. I'm still dizzy over it today … and of course, I'm now thinking my confusion is a sign of brain metastasis!!! It makes you think of giving up before you start! Yet, as I was trying to tell everyone last night, I'd like to at least START the fight before I admit defeat … which I don't plan on doing easily. Were you Stage IV? Did they do a surgery? I was told not to do a surgery as it really wouldn't be a good use of time.

                                                                                                                                                                                                                                       

                                                                                                                                                                                                                                      Thank you, again, Tina, and I hope you're doing as well now as you seem to be.

                                                                                                                                                                                                                                       

                                                                                                                                                                                                                                      Ellis

                                                                                                                                                                                                                                      ETF111
                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                        We LOVE reading these stories (although, and at least right now, no matter how many my wife reads, she's still upset!). I was hoping everyone hears the same "pitch" we did. I'm still dizzy over it today … and of course, I'm now thinking my confusion is a sign of brain metastasis!!! It makes you think of giving up before you start! Yet, as I was trying to tell everyone last night, I'd like to at least START the fight before I admit defeat … which I don't plan on doing easily. Were you Stage IV? Did they do a surgery? I was told not to do a surgery as it really wouldn't be a good use of time.

                                                                                                                                                                                                                                         

                                                                                                                                                                                                                                        Thank you, again, Tina, and I hope you're doing as well now as you seem to be.

                                                                                                                                                                                                                                         

                                                                                                                                                                                                                                        Ellis

                                                                                                                                                                                                                                        Tina D
                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                          Hi Ellis,

                                                                                                                                                                                                                                          Yes, back in 2005, I was considered stag IV, since my initial mole was on my right upper back ( in 2002) and the recurrence was in my left calf muscle. II had it surgically removed. I had a recurrence behind my left knee ( lymph nodes) over 1 yr later, and had that removed, but the surgery was scheduled so quickly that we did not have a full PET done beforehand and so 3 months later when I was healed enough, a PET scan showed groin node mets, whaich I had rmoved surgically — groin nodes, and lower abdominal nodes.I then did 6 months of interferon, as there was not much else to be offered at that time. Over a year later I had a recurrence above my right kidney… systemic treatment was recommended by a specialist at that time, but a surgical consult, and my oncologist felt my preference for surgical removal made sense, so I had it surgically removed and had another full year with no recurrence. A yr later, had a recurrence in that same area, and had it surgically removed. It was not until earlier this year, when I had numerous recurrances in more than one area that I considered systemic treatment. That is when we decided I would go on the Zelboraf, since I was BRAF positive. I had numerous mets at that time, including in my pancreas – a PET scan 3 months after starting Zelboraf came back with a complete resolution of all the tumors. For me, when the areas were surgically removable and isolated, I personally preferred to have them removed… and did have long intervals between recurrences & felt great and made many memories with our 5 children, continued homeschooling and living to see milemarkers with the kids that I statistically should not have been around for. I have seen our older 3 graduate high school and college ( one daughter is still working on nursing training but just earned her LPN licensure). And the younger 2 are now 13 and 16. Our youngest was only 2 when I was very first diagnosed.Each decision was one we had to pray over and make as best as we knew how. Gather inforamtion from specialists( second opinions can be very helpful) and from folks on here… there are so many people on here who have a wealth of knowledge and experience in this battle. We did at one point even seek an opinion from a specialist  a full day's travel away from home.

                                                                                                                                                                                                                                          I say all this to say…… CERTAINLY do not give up the fight or feel defeat from the starting gate. It is a very difficult diagnosis to receive. Many times it has seemed as if this has even been harder for my husband & I think that is the case for many spouses. They are frightened, and feeling quite helpless, and that is understandable. But…. you are not a statistic & you must remember that. The field of melanoma treatment is rapidly advancing & options are available now that were not even 1 yr ago.

                                                                                                                                                                                                                                          I do not know if you are Christians or not, but I never underestimate the power and peace that comes through giving it all into God's hands, as well. He has brought us through a tremendous amount, and we feel much gratitude to Him that I am still alive.

                                                                                                                                                                                                                                          Praying for you and your family as you are making these hard decisions in the days to come,

                                                                                                                                                                                                                                          Tina

                                                                                                                                                                                                                                          Tina D
                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                            Hi Ellis,

                                                                                                                                                                                                                                            Yes, back in 2005, I was considered stag IV, since my initial mole was on my right upper back ( in 2002) and the recurrence was in my left calf muscle. II had it surgically removed. I had a recurrence behind my left knee ( lymph nodes) over 1 yr later, and had that removed, but the surgery was scheduled so quickly that we did not have a full PET done beforehand and so 3 months later when I was healed enough, a PET scan showed groin node mets, whaich I had rmoved surgically — groin nodes, and lower abdominal nodes.I then did 6 months of interferon, as there was not much else to be offered at that time. Over a year later I had a recurrence above my right kidney… systemic treatment was recommended by a specialist at that time, but a surgical consult, and my oncologist felt my preference for surgical removal made sense, so I had it surgically removed and had another full year with no recurrence. A yr later, had a recurrence in that same area, and had it surgically removed. It was not until earlier this year, when I had numerous recurrances in more than one area that I considered systemic treatment. That is when we decided I would go on the Zelboraf, since I was BRAF positive. I had numerous mets at that time, including in my pancreas – a PET scan 3 months after starting Zelboraf came back with a complete resolution of all the tumors. For me, when the areas were surgically removable and isolated, I personally preferred to have them removed… and did have long intervals between recurrences & felt great and made many memories with our 5 children, continued homeschooling and living to see milemarkers with the kids that I statistically should not have been around for. I have seen our older 3 graduate high school and college ( one daughter is still working on nursing training but just earned her LPN licensure). And the younger 2 are now 13 and 16. Our youngest was only 2 when I was very first diagnosed.Each decision was one we had to pray over and make as best as we knew how. Gather inforamtion from specialists( second opinions can be very helpful) and from folks on here… there are so many people on here who have a wealth of knowledge and experience in this battle. We did at one point even seek an opinion from a specialist  a full day's travel away from home.

                                                                                                                                                                                                                                            I say all this to say…… CERTAINLY do not give up the fight or feel defeat from the starting gate. It is a very difficult diagnosis to receive. Many times it has seemed as if this has even been harder for my husband & I think that is the case for many spouses. They are frightened, and feeling quite helpless, and that is understandable. But…. you are not a statistic & you must remember that. The field of melanoma treatment is rapidly advancing & options are available now that were not even 1 yr ago.

                                                                                                                                                                                                                                            I do not know if you are Christians or not, but I never underestimate the power and peace that comes through giving it all into God's hands, as well. He has brought us through a tremendous amount, and we feel much gratitude to Him that I am still alive.

                                                                                                                                                                                                                                            Praying for you and your family as you are making these hard decisions in the days to come,

                                                                                                                                                                                                                                            Tina

                                                                                                                                                                                                                                            Tina D
                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                              Hi Ellis,

                                                                                                                                                                                                                                              Yes, back in 2005, I was considered stag IV, since my initial mole was on my right upper back ( in 2002) and the recurrence was in my left calf muscle. II had it surgically removed. I had a recurrence behind my left knee ( lymph nodes) over 1 yr later, and had that removed, but the surgery was scheduled so quickly that we did not have a full PET done beforehand and so 3 months later when I was healed enough, a PET scan showed groin node mets, whaich I had rmoved surgically — groin nodes, and lower abdominal nodes.I then did 6 months of interferon, as there was not much else to be offered at that time. Over a year later I had a recurrence above my right kidney… systemic treatment was recommended by a specialist at that time, but a surgical consult, and my oncologist felt my preference for surgical removal made sense, so I had it surgically removed and had another full year with no recurrence. A yr later, had a recurrence in that same area, and had it surgically removed. It was not until earlier this year, when I had numerous recurrances in more than one area that I considered systemic treatment. That is when we decided I would go on the Zelboraf, since I was BRAF positive. I had numerous mets at that time, including in my pancreas – a PET scan 3 months after starting Zelboraf came back with a complete resolution of all the tumors. For me, when the areas were surgically removable and isolated, I personally preferred to have them removed… and did have long intervals between recurrences & felt great and made many memories with our 5 children, continued homeschooling and living to see milemarkers with the kids that I statistically should not have been around for. I have seen our older 3 graduate high school and college ( one daughter is still working on nursing training but just earned her LPN licensure). And the younger 2 are now 13 and 16. Our youngest was only 2 when I was very first diagnosed.Each decision was one we had to pray over and make as best as we knew how. Gather inforamtion from specialists( second opinions can be very helpful) and from folks on here… there are so many people on here who have a wealth of knowledge and experience in this battle. We did at one point even seek an opinion from a specialist  a full day's travel away from home.

                                                                                                                                                                                                                                              I say all this to say…… CERTAINLY do not give up the fight or feel defeat from the starting gate. It is a very difficult diagnosis to receive. Many times it has seemed as if this has even been harder for my husband & I think that is the case for many spouses. They are frightened, and feeling quite helpless, and that is understandable. But…. you are not a statistic & you must remember that. The field of melanoma treatment is rapidly advancing & options are available now that were not even 1 yr ago.

                                                                                                                                                                                                                                              I do not know if you are Christians or not, but I never underestimate the power and peace that comes through giving it all into God's hands, as well. He has brought us through a tremendous amount, and we feel much gratitude to Him that I am still alive.

                                                                                                                                                                                                                                              Praying for you and your family as you are making these hard decisions in the days to come,

                                                                                                                                                                                                                                              Tina

                                                                                                                                                                                                                                              ETF111
                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                Well, my wife and I had our first meeting at Moffitt today. To say it was less than encouraging would be wrong.

                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                Hopefully, they were just giving us the "doom and gloom" speech for legal reasons. (Being a lawyer, it is what I was telling my wife … who is now inconsolable.)

                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                We were told of the 6-9 month life expectancy. Because I've got mestatic involvement in more than one place it is Stage IV and surgical removal would not be beneficial (chances of recurrence during the surgery and healng period would waste time in treatment and we'd probably see a recurrence during that time anyway). Met with the surgeon and he was able to "guess" where it started on my leg (about 2 1/2 years ago, and interestingly, the plastic surgeon who removed it said I should get a sentinal node biopsy and the oncologist we followed-up with said no, it's not going to be melanoma! Lesson learned.).

                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                They now need a brain MRI to see if any lesions there and he's expecting to see them. Then we need a needle biopsy of the two spots on my lungs with one being about 2cm at its widest spot (one showed uptake on the PET and the other didn't which, according to Dr., means it's just so big it wouldn't show it). Last they'll get the path reports and tissue samples from the biopsy and see if it's the BRAF mutation (?).

                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                Maybe he just assumed with my background or something, I can handle more or my wife can. Not the best of bedside manners, but then again, they can't sit down with each patient and cry about having twins less than 60 days ago who will never know me. they wouldn't get anything acomplished if they did.

                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                Is our "introduction" to what the future holds typical? I just think I ought to be exeriencing something horrble or feeling really bad if it's going to truly be the doom and gloom result.

                                                                                                                                                                                                                                                 

                                                                                                                                                                                                                                                Then I read of the grat stories of you all and wonder, did you all get this kind of a talk, too???

                                                                                                                                                                                                                                                ETF111
                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                  Well, my wife and I had our first meeting at Moffitt today. To say it was less than encouraging would be wrong.

                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                  Hopefully, they were just giving us the "doom and gloom" speech for legal reasons. (Being a lawyer, it is what I was telling my wife … who is now inconsolable.)

                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                  We were told of the 6-9 month life expectancy. Because I've got mestatic involvement in more than one place it is Stage IV and surgical removal would not be beneficial (chances of recurrence during the surgery and healng period would waste time in treatment and we'd probably see a recurrence during that time anyway). Met with the surgeon and he was able to "guess" where it started on my leg (about 2 1/2 years ago, and interestingly, the plastic surgeon who removed it said I should get a sentinal node biopsy and the oncologist we followed-up with said no, it's not going to be melanoma! Lesson learned.).

                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                  They now need a brain MRI to see if any lesions there and he's expecting to see them. Then we need a needle biopsy of the two spots on my lungs with one being about 2cm at its widest spot (one showed uptake on the PET and the other didn't which, according to Dr., means it's just so big it wouldn't show it). Last they'll get the path reports and tissue samples from the biopsy and see if it's the BRAF mutation (?).

                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                  Maybe he just assumed with my background or something, I can handle more or my wife can. Not the best of bedside manners, but then again, they can't sit down with each patient and cry about having twins less than 60 days ago who will never know me. they wouldn't get anything acomplished if they did.

                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                  Is our "introduction" to what the future holds typical? I just think I ought to be exeriencing something horrble or feeling really bad if it's going to truly be the doom and gloom result.

                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                  Then I read of the grat stories of you all and wonder, did you all get this kind of a talk, too???

                                                                                                                                                                                                                                                  LuckyMan51
                                                                                                                                                                                                                                                  Participant
                                                                                                                                                                                                                                                    I had the surgery August 2011. I was in hospital for 2 nights following the procedure. The only unpleasant part was when they removed the post surgical drainage tube going into my side . That was a pretty brutal ripping feeling but it lasted about 30 seconds. I really wasn’t in a lot of pain just very sore like getting hit with an airbag in a car crash type feeling. They give you a plastic device u blow in and try to hold a little ball up to expand your lungs back out. I was in hospital the 2 nights and then was home for 5 days chilling out. I felt exponentially better every day. It really wasn’t too bad (and certainly not bad given the alternative) and I think I read that surgical solutions are still the highest probability of getting cancer out as a first option. I’d bet that practicing your horn a bit, once your Doc gives you clearance, would get you back in blowing shape pretty fast..jMy breathing is absolutely great. I feel great. Sort of crazy. I definitely say my thanks for things I am blessed with and it keeps me on even keel as you can’t worry about things you can’t control. You just keep it together and react to what comes your way. Do you homework, follow which trials are underway, be an educated patient, stay focused on your family. Do some reading on Anti PD 1, Ippy/Yervoy, Gene Therapy. Some cool stuff coming out. Good luck…
                                                                                                                                                                                                                                                    ETF111
                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                      I looked at your profile and am so glad you NEED to update it. Brain AND body NED from your recent scans? CONGRTULATIONS. (A word I sure look forward to using one day.) What was your recovery time like from the lung surgery? Of all things, I just satrted a horn band about a year ago and we're finally at the point we're booking gigs, and wouldn't you know it, in addition to my family's suffering concerns and now theirs, you just feel like you're letting a bunch of people down and starting unecessary trouble for everyone. How is your breathing these days?

                                                                                                                                                                                                                                                       

                                                                                                                                                                                                                                                      Thank you so much for writing me. I look forward to hearing more. It means more than you know .. or maybe you do.

                                                                                                                                                                                                                                                       

                                                                                                                                                                                                                                                      Eliis

                                                                                                                                                                                                                                                    LuckyMan51
                                                                                                                                                                                                                                                    Participant
                                                                                                                                                                                                                                                      Buddy….Reading your post was like looking in the mirror… You are far from dead but naturally in full freak mode given this unpleasant reality that’s been forced upon you. Good news is you have found out what you have, thie number of spots is manageable and there are some great groundbreaking therapies available. After a few Melanoma spots were removed 10 yrs ago I thought I was on easy street. Had a routine scan after a blood infection 1.5 years ago and Dr’s found a lung Met which turned out to be melanoma. Cut it out with surgery through my side. Wasnt that bad. Felt like I took a good beating but couple of weeks later felt good. 6 mos after during 2nd series of follow up scans a brain met was found. Dr Jed Wolchuk from MSK in NYC started me on Yervoy and we had the Cyber Knife type radiation beam non invasive procedure done between either the 2-3 or 3-4 treatment. Just had my 1st follow up scans, body and brain and no evidence of disease (NED). Look into the Anti PD-1 trials also. I couldn’t get that one because I had the brain Met but hearing some great things about it. Keep calm, stay focused, enjoy the workouts and when you start to freak say a prayer listing at the things you are thankful for …Wife, beautiful healthy children, everything.. There isn’t enough room for the fear in your head anymore . Make sure you get a Melanoma Oncologist Specialist vs general Oncologist. Some great Dr’s available.. Get on top of this fast, learn about the options and partner with a great Quarterback/Dr and you got a good shot around fr a long time. Kiss the wife and kids and enjoy being a Dad.
                                                                                                                                                                                                                                                      LuckyMan51
                                                                                                                                                                                                                                                      Participant
                                                                                                                                                                                                                                                        Buddy….Reading your post was like looking in the mirror… You are far from dead but naturally in full freak mode given this unpleasant reality that’s been forced upon you. Good news is you have found out what you have, thie number of spots is manageable and there are some great groundbreaking therapies available. After a few Melanoma spots were removed 10 yrs ago I thought I was on easy street. Had a routine scan after a blood infection 1.5 years ago and Dr’s found a lung Met which turned out to be melanoma. Cut it out with surgery through my side. Wasnt that bad. Felt like I took a good beating but couple of weeks later felt good. 6 mos after during 2nd series of follow up scans a brain met was found. Dr Jed Wolchuk from MSK in NYC started me on Yervoy and we had the Cyber Knife type radiation beam non invasive procedure done between either the 2-3 or 3-4 treatment. Just had my 1st follow up scans, body and brain and no evidence of disease (NED). Look into the Anti PD-1 trials also. I couldn’t get that one because I had the brain Met but hearing some great things about it. Keep calm, stay focused, enjoy the workouts and when you start to freak say a prayer listing at the things you are thankful for …Wife, beautiful healthy children, everything.. There isn’t enough room for the fear in your head anymore . Make sure you get a Melanoma Oncologist Specialist vs general Oncologist. Some great Dr’s available.. Get on top of this fast, learn about the options and partner with a great Quarterback/Dr and you got a good shot around fr a long time. Kiss the wife and kids and enjoy being a Dad.
                                                                                                                                                                                                                                                        mgfree
                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                          I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                          mgfree
                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                            I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                            mgfree
                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                              I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                              mgfree
                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                mgfree
                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                  I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                  mgfree
                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                    I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                    mgfree
                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                      I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                      mgfree
                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                        I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                        mgfree
                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                          I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                          mgfree
                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                            I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                            mgfree
                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                              I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                                ETF111
                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                  Hi, it's been years …. literally 4 … since you posted. Just wondering how you're doing??? Still with us?

                                                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                                                  Obviously I am and will go for my 5 year test in a few weeks. They say if it remains "gone" (as it has to their surpise for the last 4 years) it is not expected to ever come back.

                                                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                                                  We'll see.

                                                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                                                  Hope all is well.

                                                                                                                                                                                                                                                                                  Sorry, I came across this thread randomly when researching melanoma. I just wanted to say: It makes me so happy to see one of these bleak posts where the original poster makes an update after years and is alive and well. ๐Ÿ™‚

                                                                                                                                                                                                                                                                                   

                                                                                                                                                                                                                                                                                  Hope you, the wife and the twins are doing well!

                                                                                                                                                                                                                                                                                mgfree
                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                  I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

                                                                                                                                                                                                                                                                                  Jason7979
                                                                                                                                                                                                                                                                                  Participant
                                                                                                                                                                                                                                                                                    We are in Birmingham, Alabama at UAB are there any great melanoma oncologist/specialist in Alabama. My brother was diagnosed with Stage 4 Melanoma yesterday July 17, 2018 Today we got CT results and his thoracic, lung and bones are metastatic. He doesn’t have any insurance so they aren’t being aggressive to get anything done. They have him scared that this is a death sentence. I’ve been doing research to try and get his hopes back up to fight this cancer. Any advice, info, knowledge would be gratefully appreciated.
                                                                                                                                                                                                                                                                                    Best regards,
                                                                                                                                                                                                                                                                                    Jason George
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                                                                                                                                                                                                                                                                                About the MRF Patient Forum

                                                                                                                                                                                                                                                                                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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