The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Charlie 25–Melanoma Zero

Forums General Melanoma Community Charlie 25–Melanoma Zero

  • Post
    Charlie S
    Participant

      25 years, a quarter of a century, two and a half decades, six years shy of half of my life, I have had melanoma( suffered from, my doc likes to tell his interns)  Stage III unknown primary in 1987, BIG surgery and then melanoma lay in wait nine years until  1996 when the diagnosis became Stage IV..  

      25 years, a quarter of a century, two and a half decades, six years shy of half of my life, I have had melanoma( suffered from, my doc likes to tell his interns)  Stage III unknown primary in 1987, BIG surgery and then melanoma lay in wait nine years until  1996 when the diagnosis became Stage IV..  

      Seven recurrences , fourteen surgeries, Well over two hundred infusions of different drugs, cumulative medical bills over the years surpassing three milllion dollars, one pharmacy bill alone of one hundred and eighty six THOUSAND dollars. Have had it seems, every complcation and side effect of surgery and treatment known to man. Hired doctors and fired more.  Married, divorced,, launched four startups, returned to college, made lots of money, lost lots money, my girlfriend took her last breath as she died in my arms due to complications of melanoma;; even was desperately close to being homeless.

      I have made friends and lost friends, learned what love truly is and encountered enemies

      And here I stand before you with the score at 25 for me melanoma.  Yes, you melanoma have won some battles and wounded me deeply to my core, but in the war that that has been before me  with you. the score is still Charlie 25/Melanoma Zero. and I am ahead.

      Numerous times in the past I have encouraged you to give me your best shot and you certainly have, but the overall score is mine to own.

      To others new and old, my story is not unique.  People do survive.  Yes the treatments and surgeries can be harsh, the decision to choose which one can be paralyzing.  And yes, sadly, some people do not survive.  Since none of us are getting out of here alive anyway; make your choices wisely.

      There is no silver bullet I can say to any of you.  However I would urge people to try (hard as it may be) to make medical decisions based upon science and not emotion.  As an example,I read somewhere here that diet change alone would be better than interferon.  That statement is not supported by science, but is appealing for emotional reasons

      Something else is the statistical numbers game.  Do not get caught up in it.   In 1987, there was not an AJCC a "chart" to show my odds; in 1996 there was and it was 2% five year survival for me.  Not.

       For all I know, and for all I have seen, at the very best , any treatment for advanced melanoma is 20% success.  That is our lot.  

      I do know however many people where surgery alone did it and they are alive, same with chemo, same with bio-chem, same with interferon, same with GMCSF, same with IL2, same with yervoy, same with Zelboraf, same with AVastin.  I also know an equal amount of people that no matter what treatment, died.

      Yes, clinical trials are scientific experiments that use human beings as test subjects; but without participation, no new treatments will become available.

      For me, I have been lucky that melanoma has became a disease of management; not easy mind you, but it IS possible.

      For all of you, please know that it is possible.

      Cheers,

      Charlie S

       

       

       

    Viewing 65 reply threads
    • Replies
        DebbieH
        Participant

          Ah – THERE you are!  I hate it when you disappear for a while!

          Congratulations Charlie on staying ahead in your extremely long battle!  You always give hope to newcomers here who are desperate for some good news.  I will never forget how you left your clothes behind on one visit, on the exam table, all laid out, and wish I could have seen their faces when they realized you were gone!

          We need to add BCG to your list as I know a woman who was stage IV in the late 1970's and that's all they had to offer her.  Mets all over the place and she was about 24.  She did the BCG and had tons of surgeries to remove the subq's that kept coming back but then they stopped coming back and I just saw her at a wedding last November and she's stil fine.  You just never know – just good luck and bad and keep on trying.   I'm so happy to see your post, certainly to see you're still going strong, but it also reminds me of the good times here and all the laughing we used to do in chat with you as our bartender! 

          Deb

          DebbieH
          Participant

            Ah – THERE you are!  I hate it when you disappear for a while!

            Congratulations Charlie on staying ahead in your extremely long battle!  You always give hope to newcomers here who are desperate for some good news.  I will never forget how you left your clothes behind on one visit, on the exam table, all laid out, and wish I could have seen their faces when they realized you were gone!

            We need to add BCG to your list as I know a woman who was stage IV in the late 1970's and that's all they had to offer her.  Mets all over the place and she was about 24.  She did the BCG and had tons of surgeries to remove the subq's that kept coming back but then they stopped coming back and I just saw her at a wedding last November and she's stil fine.  You just never know – just good luck and bad and keep on trying.   I'm so happy to see your post, certainly to see you're still going strong, but it also reminds me of the good times here and all the laughing we used to do in chat with you as our bartender! 

            Deb

            DebbieH
            Participant

              Ah – THERE you are!  I hate it when you disappear for a while!

              Congratulations Charlie on staying ahead in your extremely long battle!  You always give hope to newcomers here who are desperate for some good news.  I will never forget how you left your clothes behind on one visit, on the exam table, all laid out, and wish I could have seen their faces when they realized you were gone!

              We need to add BCG to your list as I know a woman who was stage IV in the late 1970's and that's all they had to offer her.  Mets all over the place and she was about 24.  She did the BCG and had tons of surgeries to remove the subq's that kept coming back but then they stopped coming back and I just saw her at a wedding last November and she's stil fine.  You just never know – just good luck and bad and keep on trying.   I'm so happy to see your post, certainly to see you're still going strong, but it also reminds me of the good times here and all the laughing we used to do in chat with you as our bartender! 

              Deb

              hope4cure1
              Participant

                All I can say is awesome, and thank you so much for being a strength and inspiration to everyone here.  I hope you understand your importance and our gratitude.  Keep it up!

                Hope

                hope4cure1
                Participant

                  All I can say is awesome, and thank you so much for being a strength and inspiration to everyone here.  I hope you understand your importance and our gratitude.  Keep it up!

                  Hope

                  hope4cure1
                  Participant

                    All I can say is awesome, and thank you so much for being a strength and inspiration to everyone here.  I hope you understand your importance and our gratitude.  Keep it up!

                    Hope

                    Janner
                    Participant

                      Keep on keepin' on, Charlie.  Nice to see you popping in here to give an update!

                      Cheers,

                      Janner

                      Janner
                      Participant

                        Keep on keepin' on, Charlie.  Nice to see you popping in here to give an update!

                        Cheers,

                        Janner

                        Janner
                        Participant

                          Keep on keepin' on, Charlie.  Nice to see you popping in here to give an update!

                          Cheers,

                          Janner

                          lhaley
                          Participant

                            Charlie,

                            Great to hear from you with such a good message.  One day I want to grow up just like you, well at least I want to beat mel one more time!!  I've done surgerys, more surgerys and more.  Did a year lukine and a few radiations.  Throw in a crainactomy to get rid of the edema.   This time the radiation ended up into bleeding and has decided to seed out.   So taking my chanced now with my braf card.  There is to much I have to do.

                            Stay well ,

                            Linda

                            lhaley
                            Participant

                              Charlie,

                              Great to hear from you with such a good message.  One day I want to grow up just like you, well at least I want to beat mel one more time!!  I've done surgerys, more surgerys and more.  Did a year lukine and a few radiations.  Throw in a crainactomy to get rid of the edema.   This time the radiation ended up into bleeding and has decided to seed out.   So taking my chanced now with my braf card.  There is to much I have to do.

                              Stay well ,

                              Linda

                              lhaley
                              Participant

                                Charlie,

                                Great to hear from you with such a good message.  One day I want to grow up just like you, well at least I want to beat mel one more time!!  I've done surgerys, more surgerys and more.  Did a year lukine and a few radiations.  Throw in a crainactomy to get rid of the edema.   This time the radiation ended up into bleeding and has decided to seed out.   So taking my chanced now with my braf card.  There is to much I have to do.

                                Stay well ,

                                Linda

                                awillett1991
                                Participant
                                  Awesome post Charlie!! Thanks so much For putting this out there tonight, been really crappy ( Zel side effects) tonight and you really said the right thing at just the right time for me.

                                  No one ever said this was gonna be easy.

                                  awillett1991
                                  Participant
                                    Awesome post Charlie!! Thanks so much For putting this out there tonight, been really crappy ( Zel side effects) tonight and you really said the right thing at just the right time for me.

                                    No one ever said this was gonna be easy.

                                    awillett1991
                                    Participant
                                      Awesome post Charlie!! Thanks so much For putting this out there tonight, been really crappy ( Zel side effects) tonight and you really said the right thing at just the right time for me.

                                      No one ever said this was gonna be easy.

                                      Liz C
                                      Participant

                                        Hi, Charlie.

                                        I'm just back on these boards after 9 years NED and you were my first thought…wondering how to tactfully inquire as to your health.

                                        And here is your wonderful, uplifting and so very wise and well-articulated post.

                                        Thank you so much for all you've done for all of us.

                                        –Liz.

                                        Liz C
                                        Participant

                                          Hi, Charlie.

                                          I'm just back on these boards after 9 years NED and you were my first thought…wondering how to tactfully inquire as to your health.

                                          And here is your wonderful, uplifting and so very wise and well-articulated post.

                                          Thank you so much for all you've done for all of us.

                                          –Liz.

                                          Liz C
                                          Participant

                                            Hi, Charlie.

                                            I'm just back on these boards after 9 years NED and you were my first thought…wondering how to tactfully inquire as to your health.

                                            And here is your wonderful, uplifting and so very wise and well-articulated post.

                                            Thank you so much for all you've done for all of us.

                                            –Liz.

                                            Harry in Fair Oaks
                                            Participant

                                              Wow Charlie!  You make me, with only 15 years of living with metastatic disease, seem like a rank amateur.  At this rate I'll never catch up to you!

                                              Best wishes,

                                              Harry

                                              Harry in Fair Oaks
                                              Participant

                                                Wow Charlie!  You make me, with only 15 years of living with metastatic disease, seem like a rank amateur.  At this rate I'll never catch up to you!

                                                Best wishes,

                                                Harry

                                                Harry in Fair Oaks
                                                Participant

                                                  Wow Charlie!  You make me, with only 15 years of living with metastatic disease, seem like a rank amateur.  At this rate I'll never catch up to you!

                                                  Best wishes,

                                                  Harry

                                                  aldakota22
                                                  Participant

                                                    Thanks Charlie for saying what I feel about this disease .It is not a death sentence but a life changer for many of us.Always in my mind that if you and so many can Live with "M" Why not me also? Keep fighting and never give up.All of us are always in my prayers..Beat the Beast.  Al

                                                    aldakota22
                                                    Participant

                                                      Thanks Charlie for saying what I feel about this disease .It is not a death sentence but a life changer for many of us.Always in my mind that if you and so many can Live with "M" Why not me also? Keep fighting and never give up.All of us are always in my prayers..Beat the Beast.  Al

                                                      aldakota22
                                                      Participant

                                                        Thanks Charlie for saying what I feel about this disease .It is not a death sentence but a life changer for many of us.Always in my mind that if you and so many can Live with "M" Why not me also? Keep fighting and never give up.All of us are always in my prayers..Beat the Beast.  Al

                                                        Linny
                                                        Participant

                                                          Here I am dealing with "scanxiety" issues for my visit to Hopkins on the 21st and along comes your post. It is so great to hear from a 25 year veteran who's alive and kicking some serious butt!!! You and I have much in common: unknown primary and one positive lymph node. The only differences are that mine was in the left axilla and I had the full LND rather than a partial.

                                                          Thank you so much for your post, Charlie. God bless you!

                                                          Linny
                                                          Participant

                                                            Here I am dealing with "scanxiety" issues for my visit to Hopkins on the 21st and along comes your post. It is so great to hear from a 25 year veteran who's alive and kicking some serious butt!!! You and I have much in common: unknown primary and one positive lymph node. The only differences are that mine was in the left axilla and I had the full LND rather than a partial.

                                                            Thank you so much for your post, Charlie. God bless you!

                                                            Linny
                                                            Participant

                                                              Here I am dealing with "scanxiety" issues for my visit to Hopkins on the 21st and along comes your post. It is so great to hear from a 25 year veteran who's alive and kicking some serious butt!!! You and I have much in common: unknown primary and one positive lymph node. The only differences are that mine was in the left axilla and I had the full LND rather than a partial.

                                                              Thank you so much for your post, Charlie. God bless you!

                                                              KathieG
                                                              Participant

                                                                This post made my day – no, it made my year! 

                                                                You don't know me but my husband, Bob, was diagnosed in 2005 and lost his battle with the beast in 2010.  He fought hard, and, though I didn't always agree with his decisions, they were HIS decisions and I always remembered the things that you said.  I used to read your posts to him and remind him that some people do win the battle – you are one tough SOB and he loved your no nonsense approach to melanoma.  I hope that you will always remember that you helped so many of us – the silent ones – and that we are always cheering you on.  Thanks for sharing your life and your courage and your attitude with all of us.  Keep up the good fight.

                                                                KathieG
                                                                Participant

                                                                  This post made my day – no, it made my year! 

                                                                  You don't know me but my husband, Bob, was diagnosed in 2005 and lost his battle with the beast in 2010.  He fought hard, and, though I didn't always agree with his decisions, they were HIS decisions and I always remembered the things that you said.  I used to read your posts to him and remind him that some people do win the battle – you are one tough SOB and he loved your no nonsense approach to melanoma.  I hope that you will always remember that you helped so many of us – the silent ones – and that we are always cheering you on.  Thanks for sharing your life and your courage and your attitude with all of us.  Keep up the good fight.

                                                                    Laurie from maine
                                                                    Participant

                                                                      Charlie,

                                                                      you can see how much everyone appreciated you posting, your sense of humor and history with melaoma offers hope.  This board needed that sense of humor and fight that you show.  There are some real fighters on here going thru tough times right now, I am sure your post heped soo many.  

                                                                      Thank you for posting

                                                                      laurie from maine

                                                                      Laurie from maine
                                                                      Participant

                                                                        Charlie,

                                                                        you can see how much everyone appreciated you posting, your sense of humor and history with melaoma offers hope.  This board needed that sense of humor and fight that you show.  There are some real fighters on here going thru tough times right now, I am sure your post heped soo many.  

                                                                        Thank you for posting

                                                                        laurie from maine

                                                                        Laurie from maine
                                                                        Participant

                                                                          Charlie,

                                                                          you can see how much everyone appreciated you posting, your sense of humor and history with melaoma offers hope.  This board needed that sense of humor and fight that you show.  There are some real fighters on here going thru tough times right now, I am sure your post heped soo many.  

                                                                          Thank you for posting

                                                                          laurie from maine

                                                                        KathieG
                                                                        Participant

                                                                          This post made my day – no, it made my year! 

                                                                          You don't know me but my husband, Bob, was diagnosed in 2005 and lost his battle with the beast in 2010.  He fought hard, and, though I didn't always agree with his decisions, they were HIS decisions and I always remembered the things that you said.  I used to read your posts to him and remind him that some people do win the battle – you are one tough SOB and he loved your no nonsense approach to melanoma.  I hope that you will always remember that you helped so many of us – the silent ones – and that we are always cheering you on.  Thanks for sharing your life and your courage and your attitude with all of us.  Keep up the good fight.

                                                                          PSD
                                                                          Participant
                                                                            Charlie,

                                                                            What a great, motivating note to all of us who has been touched by this nasty beast. I am pleased to see you post again. And you still have such passion and fight.
                                                                            Although I do not come back to this site often, I do peek from time to time. I think of many of you these past four years. I had a couple scares which lead to a benign biopsy at my WLE in January and several scans and tests for a hypoechoic nodule in February. All is good for now.
                                                                            Thanks for the update, Charlie!
                                                                            Pam D

                                                                            PSD
                                                                            Participant
                                                                              Charlie,

                                                                              What a great, motivating note to all of us who has been touched by this nasty beast. I am pleased to see you post again. And you still have such passion and fight.
                                                                              Although I do not come back to this site often, I do peek from time to time. I think of many of you these past four years. I had a couple scares which lead to a benign biopsy at my WLE in January and several scans and tests for a hypoechoic nodule in February. All is good for now.
                                                                              Thanks for the update, Charlie!
                                                                              Pam D

                                                                              PSD
                                                                              Participant
                                                                                Charlie,

                                                                                What a great, motivating note to all of us who has been touched by this nasty beast. I am pleased to see you post again. And you still have such passion and fight.
                                                                                Although I do not come back to this site often, I do peek from time to time. I think of many of you these past four years. I had a couple scares which lead to a benign biopsy at my WLE in January and several scans and tests for a hypoechoic nodule in February. All is good for now.
                                                                                Thanks for the update, Charlie!
                                                                                Pam D

                                                                                  Snickers60
                                                                                  Participant

                                                                                    Whooo hoooo – way to go CHARLIE !   We (3 X warrior Wayne hubby) are back on the board after 13 1/2 years NED after ear lobe removal with mets all over the place (except brain).    March 7, 2012 new diagnosis.  

                                                                                    WOW – 25 – that's so good to hear with us here packing – getting ready for that dreaded PET SCAN on Thursday.  

                                                                                    Warrior Wayne did so well on ZEL (cancer in liver, lungs, sternum, spine, leg/bone) gone in only 7 weeks on ZEL, that we are EXPECTING a GOOD REPORT – but there's this little thing inside you that always just holds its breath, until it's all over and you see the results.   

                                                                                    Thank you for posting !   I'm sure we talked to you back in the day, but it's good to hear this kind of report.

                                                                                    WAY TO GO CHARLIE !    May you get, at least, 25 more !!!!  πŸ™‚ 

                                                                                    Nancy (devoted wife of  3X Warrior Wayne) 

                                                                                    Snickers60
                                                                                    Participant

                                                                                      Whooo hoooo – way to go CHARLIE !   We (3 X warrior Wayne hubby) are back on the board after 13 1/2 years NED after ear lobe removal with mets all over the place (except brain).    March 7, 2012 new diagnosis.  

                                                                                      WOW – 25 – that's so good to hear with us here packing – getting ready for that dreaded PET SCAN on Thursday.  

                                                                                      Warrior Wayne did so well on ZEL (cancer in liver, lungs, sternum, spine, leg/bone) gone in only 7 weeks on ZEL, that we are EXPECTING a GOOD REPORT – but there's this little thing inside you that always just holds its breath, until it's all over and you see the results.   

                                                                                      Thank you for posting !   I'm sure we talked to you back in the day, but it's good to hear this kind of report.

                                                                                      WAY TO GO CHARLIE !    May you get, at least, 25 more !!!!  πŸ™‚ 

                                                                                      Nancy (devoted wife of  3X Warrior Wayne) 

                                                                                      Snickers60
                                                                                      Participant

                                                                                        Whooo hoooo – way to go CHARLIE !   We (3 X warrior Wayne hubby) are back on the board after 13 1/2 years NED after ear lobe removal with mets all over the place (except brain).    March 7, 2012 new diagnosis.  

                                                                                        WOW – 25 – that's so good to hear with us here packing – getting ready for that dreaded PET SCAN on Thursday.  

                                                                                        Warrior Wayne did so well on ZEL (cancer in liver, lungs, sternum, spine, leg/bone) gone in only 7 weeks on ZEL, that we are EXPECTING a GOOD REPORT – but there's this little thing inside you that always just holds its breath, until it's all over and you see the results.   

                                                                                        Thank you for posting !   I'm sure we talked to you back in the day, but it's good to hear this kind of report.

                                                                                        WAY TO GO CHARLIE !    May you get, at least, 25 more !!!!  πŸ™‚ 

                                                                                        Nancy (devoted wife of  3X Warrior Wayne) 

                                                                                      BonnieLea
                                                                                      Participant

                                                                                        great to hear your quarter of a century news…. congratulations Mr. Charlie….. may we all aspire to continue on!

                                                                                        BonnieLea
                                                                                        Participant

                                                                                          great to hear your quarter of a century news…. congratulations Mr. Charlie….. may we all aspire to continue on!

                                                                                          BonnieLea
                                                                                          Participant

                                                                                            great to hear your quarter of a century news…. congratulations Mr. Charlie….. may we all aspire to continue on!

                                                                                            Eileen L
                                                                                            Participant

                                                                                              Hi Charlie. So good to see your post on the board. Just what I needed at this very moment, a bit of cheer leading, a bit of your unique "kick in the pants" encouragement! You are such a fighter, and you remind me that I can live a full life while I fight the good fight against the beast.  To advocate for what I need, to make the hard decisions, and to keep on fighting.

                                                                                              Lots of love,

                                                                                              Eileen L from San Francisco

                                                                                              Eileen L
                                                                                              Participant

                                                                                                Hi Charlie. So good to see your post on the board. Just what I needed at this very moment, a bit of cheer leading, a bit of your unique "kick in the pants" encouragement! You are such a fighter, and you remind me that I can live a full life while I fight the good fight against the beast.  To advocate for what I need, to make the hard decisions, and to keep on fighting.

                                                                                                Lots of love,

                                                                                                Eileen L from San Francisco

                                                                                                Eileen L
                                                                                                Participant

                                                                                                  Hi Charlie. So good to see your post on the board. Just what I needed at this very moment, a bit of cheer leading, a bit of your unique "kick in the pants" encouragement! You are such a fighter, and you remind me that I can live a full life while I fight the good fight against the beast.  To advocate for what I need, to make the hard decisions, and to keep on fighting.

                                                                                                  Lots of love,

                                                                                                  Eileen L from San Francisco

                                                                                                  Karin L
                                                                                                  Participant

                                                                                                    Knock that off Charlie!  Check in once in a while more often as we all miss you here : ).  I know your thrilled with this news, as are we.  WTG.

                                                                                                    Karin

                                                                                                    Karin L
                                                                                                    Participant

                                                                                                      Knock that off Charlie!  Check in once in a while more often as we all miss you here : ).  I know your thrilled with this news, as are we.  WTG.

                                                                                                      Karin

                                                                                                      Karin L
                                                                                                      Participant

                                                                                                        Knock that off Charlie!  Check in once in a while more often as we all miss you here : ).  I know your thrilled with this news, as are we.  WTG.

                                                                                                        Karin

                                                                                                        jag
                                                                                                        Participant

                                                                                                          Atta boy Charlie! and congratulations, hope to see you posting in another 25yrs.  Oh wait there hopefully won't be a need for this board, and the melanoma nightmare will be just another manageable disease like diabetes.  So far it looks like you have managed it better, and have written your own great story of survival.  Someday I hope to buy the book.

                                                                                                          jag
                                                                                                          Participant

                                                                                                            Atta boy Charlie! and congratulations, hope to see you posting in another 25yrs.  Oh wait there hopefully won't be a need for this board, and the melanoma nightmare will be just another manageable disease like diabetes.  So far it looks like you have managed it better, and have written your own great story of survival.  Someday I hope to buy the book.

                                                                                                            jag
                                                                                                            Participant

                                                                                                              Atta boy Charlie! and congratulations, hope to see you posting in another 25yrs.  Oh wait there hopefully won't be a need for this board, and the melanoma nightmare will be just another manageable disease like diabetes.  So far it looks like you have managed it better, and have written your own great story of survival.  Someday I hope to buy the book.

                                                                                                              Rocco
                                                                                                              Participant

                                                                                                                Hey Charilie,

                                                                                                                25 years – show off!  Seriously, thanks for the informative posts and sharing of both opinion and facts over the years.  They were especially helpful to me during the early days of my diagnosis and various treatments.  Now, care to share any advise on how to 'make lots of money' – esp in this economy?

                                                                                                                Hang in there!

                                                                                                                Rocco – Stage IV since 2005, Ipi Responder since 2009 

                                                                                                                Rocco
                                                                                                                Participant

                                                                                                                  Hey Charilie,

                                                                                                                  25 years – show off!  Seriously, thanks for the informative posts and sharing of both opinion and facts over the years.  They were especially helpful to me during the early days of my diagnosis and various treatments.  Now, care to share any advise on how to 'make lots of money' – esp in this economy?

                                                                                                                  Hang in there!

                                                                                                                  Rocco – Stage IV since 2005, Ipi Responder since 2009 

                                                                                                                  Rocco
                                                                                                                  Participant

                                                                                                                    Hey Charilie,

                                                                                                                    25 years – show off!  Seriously, thanks for the informative posts and sharing of both opinion and facts over the years.  They were especially helpful to me during the early days of my diagnosis and various treatments.  Now, care to share any advise on how to 'make lots of money' – esp in this economy?

                                                                                                                    Hang in there!

                                                                                                                    Rocco – Stage IV since 2005, Ipi Responder since 2009 

                                                                                                                    himynameiskevin
                                                                                                                    Participant

                                                                                                                      Yeah Charlie! You're the man!

                                                                                                                      Great to hear, giving me goosbumps the whole read!

                                                                                                                      And giving me genuine hope in times of need!

                                                                                                                      Thanks for keeping us up to date.

                                                                                                                      Continuous health to you my friend.

                                                                                                                      πŸ™‚

                                                                                                                      Warmly, Kevin

                                                                                                                      himynameiskevin
                                                                                                                      Participant

                                                                                                                        Yeah Charlie! You're the man!

                                                                                                                        Great to hear, giving me goosbumps the whole read!

                                                                                                                        And giving me genuine hope in times of need!

                                                                                                                        Thanks for keeping us up to date.

                                                                                                                        Continuous health to you my friend.

                                                                                                                        πŸ™‚

                                                                                                                        Warmly, Kevin

                                                                                                                        himynameiskevin
                                                                                                                        Participant

                                                                                                                          Yeah Charlie! You're the man!

                                                                                                                          Great to hear, giving me goosbumps the whole read!

                                                                                                                          And giving me genuine hope in times of need!

                                                                                                                          Thanks for keeping us up to date.

                                                                                                                          Continuous health to you my friend.

                                                                                                                          πŸ™‚

                                                                                                                          Warmly, Kevin

                                                                                                                          killmel
                                                                                                                          Participant

                                                                                                                            Charlie,

                                                                                                                            You are a walking "miracle" to be cancer free after living with the BEAST for 25years.

                                                                                                                            May the next 25 years bring you health, happiness, and prosperity.

                                                                                                                            Warm Wishes,

                                                                                                                            MaryBeth

                                                                                                                            killmel
                                                                                                                            Participant

                                                                                                                              Charlie,

                                                                                                                              You are a walking "miracle" to be cancer free after living with the BEAST for 25years.

                                                                                                                              May the next 25 years bring you health, happiness, and prosperity.

                                                                                                                              Warm Wishes,

                                                                                                                              MaryBeth

                                                                                                                              killmel
                                                                                                                              Participant

                                                                                                                                Charlie,

                                                                                                                                You are a walking "miracle" to be cancer free after living with the BEAST for 25years.

                                                                                                                                May the next 25 years bring you health, happiness, and prosperity.

                                                                                                                                Warm Wishes,

                                                                                                                                MaryBeth

                                                                                                                                Jewel
                                                                                                                                Participant

                                                                                                                                  Charlie,

                                                                                                                                     That is such great news….the power of hope that you give to many is priceless….:-)

                                                                                                                                   

                                                                                                                                  The history of your treatments end in 2004, have you had any such treatments since then?

                                                                                                                                   

                                                                                                                                  Thanks Charlie,

                                                                                                                                   

                                                                                                                                  Jewel

                                                                                                                                  Jewel
                                                                                                                                  Participant

                                                                                                                                    Charlie,

                                                                                                                                       That is such great news….the power of hope that you give to many is priceless….:-)

                                                                                                                                     

                                                                                                                                    The history of your treatments end in 2004, have you had any such treatments since then?

                                                                                                                                     

                                                                                                                                    Thanks Charlie,

                                                                                                                                     

                                                                                                                                    Jewel

                                                                                                                                    Jewel
                                                                                                                                    Participant

                                                                                                                                      Charlie,

                                                                                                                                         That is such great news….the power of hope that you give to many is priceless….:-)

                                                                                                                                       

                                                                                                                                      The history of your treatments end in 2004, have you had any such treatments since then?

                                                                                                                                       

                                                                                                                                      Thanks Charlie,

                                                                                                                                       

                                                                                                                                      Jewel

                                                                                                                                      sandywebb
                                                                                                                                      Participant

                                                                                                                                        WOW!!!!  Thank you for that post!!!!  Docs are looking at possible lung mets for me and I think trying to take my 5yr.NED title from me. I have been sooooo worried, mad and dusgusted. Seeing your post has made me put on the boxing gloves again and say BRING IT!!!  I have beat you before and I will again!!!!   Again,,THANKS!!!!!!!

                                                                                                                                        sandywebb
                                                                                                                                        Participant

                                                                                                                                          WOW!!!!  Thank you for that post!!!!  Docs are looking at possible lung mets for me and I think trying to take my 5yr.NED title from me. I have been sooooo worried, mad and dusgusted. Seeing your post has made me put on the boxing gloves again and say BRING IT!!!  I have beat you before and I will again!!!!   Again,,THANKS!!!!!!!

                                                                                                                                          sandywebb
                                                                                                                                          Participant

                                                                                                                                            WOW!!!!  Thank you for that post!!!!  Docs are looking at possible lung mets for me and I think trying to take my 5yr.NED title from me. I have been sooooo worried, mad and dusgusted. Seeing your post has made me put on the boxing gloves again and say BRING IT!!!  I have beat you before and I will again!!!!   Again,,THANKS!!!!!!!

                                                                                                                                            JerryfromFauq
                                                                                                                                            Participant

                                                                                                                                              So very glad to see your post!  I'm slowing down for other resons but still hanging in there against Melanoma.

                                                                                                                                                 I will always remember your trying to see me at the Hospital at UVA and the response you provided when they kept telling me  (for over six months) essentially stable".  In 2007 You told me, when I asked how much longer one could stay here like that, that You couldn't say, but that You could say to not count oneself out even if not NED nor even if not stable.

                                                                                                                                              I'm still just trying to follow your advice and learn and "WORK THE PROBLEM".  (ps I still have the same email address.)

                                                                                                                                              Still think yor are "THE MAN"

                                                                                                                                              JerryfromFauq
                                                                                                                                              Participant

                                                                                                                                                So very glad to see your post!  I'm slowing down for other resons but still hanging in there against Melanoma.

                                                                                                                                                   I will always remember your trying to see me at the Hospital at UVA and the response you provided when they kept telling me  (for over six months) essentially stable".  In 2007 You told me, when I asked how much longer one could stay here like that, that You couldn't say, but that You could say to not count oneself out even if not NED nor even if not stable.

                                                                                                                                                I'm still just trying to follow your advice and learn and "WORK THE PROBLEM".  (ps I still have the same email address.)

                                                                                                                                                Still think yor are "THE MAN"

                                                                                                                                                JerryfromFauq
                                                                                                                                                Participant

                                                                                                                                                  So very glad to see your post!  I'm slowing down for other resons but still hanging in there against Melanoma.

                                                                                                                                                     I will always remember your trying to see me at the Hospital at UVA and the response you provided when they kept telling me  (for over six months) essentially stable".  In 2007 You told me, when I asked how much longer one could stay here like that, that You couldn't say, but that You could say to not count oneself out even if not NED nor even if not stable.

                                                                                                                                                  I'm still just trying to follow your advice and learn and "WORK THE PROBLEM".  (ps I still have the same email address.)

                                                                                                                                                  Still think yor are "THE MAN"

                                                                                                                                                  NancyGM
                                                                                                                                                  Participant

                                                                                                                                                    I really like the disease of management concept, Charlie….congrats on your 25 years!! I will be 5 years NED by January (knock on wood) and even if I'm not, I have learned hope is all we really have and that all we really can do is to get up in the morning and deal with that one day ahead of us…

                                                                                                                                                    .I am awaiting the final appeal decision from Social Security Disability. The last hearing was almost 3 months ago. I had a good lawyer, did my homework and felt prepared…. I am in school again and grateful for the kind of inspiration you have provided to get on with living. Thanks, Charlie!

                                                                                                                                                    NancyGM
                                                                                                                                                    Participant

                                                                                                                                                      I really like the disease of management concept, Charlie….congrats on your 25 years!! I will be 5 years NED by January (knock on wood) and even if I'm not, I have learned hope is all we really have and that all we really can do is to get up in the morning and deal with that one day ahead of us…

                                                                                                                                                      .I am awaiting the final appeal decision from Social Security Disability. The last hearing was almost 3 months ago. I had a good lawyer, did my homework and felt prepared…. I am in school again and grateful for the kind of inspiration you have provided to get on with living. Thanks, Charlie!

                                                                                                                                                      NancyGM
                                                                                                                                                      Participant

                                                                                                                                                        I really like the disease of management concept, Charlie….congrats on your 25 years!! I will be 5 years NED by January (knock on wood) and even if I'm not, I have learned hope is all we really have and that all we really can do is to get up in the morning and deal with that one day ahead of us…

                                                                                                                                                        .I am awaiting the final appeal decision from Social Security Disability. The last hearing was almost 3 months ago. I had a good lawyer, did my homework and felt prepared…. I am in school again and grateful for the kind of inspiration you have provided to get on with living. Thanks, Charlie!

                                                                                                                                                    Viewing 65 reply threads
                                                                                                                                                    • You must be logged in to reply to this topic.
                                                                                                                                                    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.

                                                                                                                                                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide byΒ MRF posting policies.

                                                                                                                                                    Popular Topics