Stage IV..Roll Call for the Undead Please

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

Mary

Stage 3

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

Mary

Stage 3

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

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

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

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

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

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

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

Life is still good.

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

Life is still good.

Thank you for reminding us what we are all about.

Stage IV and Undead.

Jerry from Cape Cod

Thank you for reminding us what we are all about.

Stage IV and Undead.

Jerry from Cape Cod

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

I AM the Walking UN-Dead !  

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

Pvt. 4th Class  Grady "Shady" Lewis, 

3rd Class April 2009- August 2010

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

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

God save the Queen, and please pass the grits.

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

I AM the Walking UN-Dead !  

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

Pvt. 4th Class  Grady "Shady" Lewis, 

3rd Class April 2009- August 2010

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

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

God save the Queen, and please pass the grits.

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

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

Mary

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

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

Mary

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

Stage IV and Undead…Val

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

Stage IV and Undead…Val

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

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

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

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

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

Stay Strong

King

Stage III Unknown Primary 3/2004

Groin dissection 4/2004 NED

Interferon 5/2004-4/2005

Liver mets 7/2005

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

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

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

Surgery to remove pancreatic tumor and subq  2008 NED

Hang onto hope and live each day to the fullest!

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

Stay Strong

King

Stage III Unknown Primary 3/2004

Groin dissection 4/2004 NED

Interferon 5/2004-4/2005

Liver mets 7/2005

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

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

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

Surgery to remove pancreatic tumor and subq  2008 NED

Hang onto hope and live each day to the fullest!

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

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

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

Suzanne

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

Suzanne

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

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

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

Living life and loving it!

Linda

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

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

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

Living life and loving it!

Linda

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

Pat

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

Pat

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

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

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

Deb

lovingwife to Bob, stage 3c

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

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

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

Deb

lovingwife to Bob, stage 3c

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

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

Yay Charlie for saying it so well!

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

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

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

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

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

Yay Charlie for saying it so well!

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

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

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

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

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

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

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

Krista

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

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

Krista

FREAKIN' UNDEAD IS RIGHT!  

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

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

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

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

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

Love…

Debbie STAGE 4 NED

[email protected]

FREAKIN' UNDEAD IS RIGHT!  

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

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

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

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

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

Love…

Debbie STAGE 4 NED

[email protected]

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

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

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

Stay Strong!

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

Love,

Amy
 

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

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

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

Stay Strong!

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

Love,

Amy
 

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

Laurie

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

Laurie

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

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

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

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

I AM UNDEAD!

Not today, and probably not tomorrow either. 

KatyWI

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

Thanks Charlie, I think we all needed this today.

I AM UNDEAD!

Not today, and probably not tomorrow either. 

KatyWI

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

Thanks Charlie, I think we all needed this today.

Hi Charlie,

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

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

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

Best Wishes,

Jim

Hi Charlie,

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

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

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

Best Wishes,

Jim

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

Rocco – Stage IV

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

Rocco – Stage IV

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

VATS – 2/2/10

IL-2 – 5/10

NED – 6/10

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

VATS – 2/2/10

IL-2 – 5/10

NED – 6/10

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

VATS – 2/2/10

IL-2 – 5/10

NED – 6/10

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

VATS – 2/2/10

IL-2 – 5/10

NED – 6/10

Well put, Charlie!

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

Hugs

Sharyn, Stage IV

Well put, Charlie!

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

Hugs

Sharyn, Stage IV

Hello Commards…LOL,

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

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

Any suggestions?  Please post.

Stage IV Warrior on the War Path!

Biggest hugs to all!!

Suzan AB

Braf positive…

P.S.  Reno Sharon are you still around?

Hello Commards…LOL,

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

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

Any suggestions?  Please post.

Stage IV Warrior on the War Path!

Biggest hugs to all!!

Suzan AB

Braf positive…

P.S.  Reno Sharon are you still around?

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

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

Good to see you Charlie.

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

dian

Good to see you Charlie.

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

dian

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

Paul

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

Paul

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

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

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

Cheers!

Alicia

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

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

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

Cheers!

Alicia

What can I say!  Love that fighting man!

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

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

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

JerryfromFauq

What can I say!  Love that fighting man!

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

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

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

JerryfromFauq

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

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

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

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

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

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

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

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

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

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

Eileen L

Stage IV

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

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

Eileen L

Stage IV

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ed

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

Ed

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

Ed

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

Ed

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

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

CHARLIE!  SIR!

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

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

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

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

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

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

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

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

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

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

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

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

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

CHARLIE!  SIR!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Frannie in West Michigan

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

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

Frannie in West Michigan

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

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

N.E.D as of last scan  oct 2010

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

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

    StanN

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

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

N.E.D as of last scan  oct 2010

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

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

    StanN

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

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

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

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

Best wishes to all,

Harry

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

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

Best wishes to all,

Harry

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

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

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

NOT this girl and NOT today!

Kelly aka Blueyes

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

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

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

NOT this girl and NOT today!

Kelly aka Blueyes

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

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

Hi Charlie,

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

Blessings, Shari

Hi Charlie,

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

Blessings, Shari

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

Earl

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

Earl

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

Wetterhorn

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

Wetterhorn

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

Love and Light

Carole

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

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

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

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

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

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

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

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

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

Keep Smiling!

Amanda

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

Keep Smiling!

Amanda

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

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

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

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

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

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

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

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

Thank you, Charlie S!

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

God bless you, Charlie!

Sandi

Thank you, Charlie S!

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

God bless you, Charlie!

Sandi

Add us to the Stage IV ranks…newly diagnosed.

1st diagnosed May 09 at stage IA.

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

Let the undead walking begin!

Michelle, wife of Don, Stage IV

Add us to the Stage IV ranks…newly diagnosed.

1st diagnosed May 09 at stage IA.

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

Let the undead walking begin!

Michelle, wife of Don, Stage IV

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

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

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

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

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

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

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

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

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

Go Charlie, go Charlie, go Charlie!

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

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

Cheryl

Go Charlie, go Charlie, go Charlie!

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

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

Cheryl

Go Charlie, go Charlie, go Charlie!

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

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

Cheryl

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

Definitely UNDEAD!!!

Cristy, Stage IV

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

Definitely UNDEAD!!!

Cristy, Stage IV

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

Definitely UNDEAD!!!

Cristy, Stage IV

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

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

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

Charlie,

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

Thank you for your message.

Zeus

Charlie,

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

Thank you for your message.

Zeus

Charlie,

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

Thank you for your message.

Zeus

Hey everyone,

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

Love and Hope and FIGHT to everyone here!!

Hey everyone,

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

Love and Hope and FIGHT to everyone here!!

Hey everyone,

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

Love and Hope and FIGHT to everyone here!!

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

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

Tina 

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

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

Tina 

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

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

Tina