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Charlie 26 Melanoma Zero

Forums Caregiver Community Charlie 26 Melanoma Zero

  • Post
    Charlie S
    Participant

      This month, in 1987 a surgeon stuck a knife in me to remove a lump.  That lump, a lymph node,  ended up being a lymph node that had been completely replaced with cancer and after an exhaustive pathology, and examination by  an electron microscope, six months later was determined   to be  Stage Three Malignant Melanoma with an Unknown primary.

      Plus one year, that was a quarter of a century ago.

      This month, in 1987 a surgeon stuck a knife in me to remove a lump.  That lump, a lymph node,  ended up being a lymph node that had been completely replaced with cancer and after an exhaustive pathology, and examination by  an electron microscope, six months later was determined   to be  Stage Three Malignant Melanoma with an Unknown primary.

      Plus one year, that was a quarter of a century ago.

      My prognosis?  Time bomb.  It was not a matter of if but when.  There was no MRI, there was no CT , there was no PET, there was no Sentinel Node Biopsy, there was no Clarks , there was no Breslow, there was no internet, there was no MPIP, there was no MRF and  only two researchers, Seglar at Duke and Rosenberg at NIH  had an interest in melanoma.  I saw them both.

      I went crazy, got a Macrobiotic Reading in DC, moved in with a bunch in Boston that were followers of Michio Kushi, drifted away after a year and wnet about living.

      Fast forward nine years later to 1996 and I felt a new lump.

      I could go on and on, but since 1996, when I became Stage IV, melanoma and I have have been in several fights.

      Once, I openly defied melanoma to give me its' best shot.  It did, but what I did not realize is that it would go after my friends, and it killed many of them.

      Once, I met a lady here, Kim Hanley (Kim from Iowa) and we ended up being lovers, and I ended up being her caregiver and she ended up dying in my arms

      At her death, is when I first met Melanoma face to face.  Moments after Kim died and her body went cold, a person threw their body across Kim and then was inches from my face laughing, but scared.  The evil in that persons eyes were evident as was the aura of death, yet there was fear…….fear that I would not acknowledge; and that person ran from the house.  I do believe to this day that it was melanoma fleeing and Kim threw it out.

      My patnet is seriously out of date about my 7 recurrences and Kim are not documented here and how I overcame them, but know this:

      Charlie 26 Melanoma Zero.

      If I can do it, so can you.

      Take THAT Melanoma

      Cheers,

      Charlie S

       

       

       

       

    Viewing 38 reply threads
    • Replies
        aldakota22
        Participant

          Charlie love reading your posts. As a veteran in this fight you have a perspective I hope to acheive one day. You may have lost some battles but you are still the victor in this war..TWENTY SIX YEARS and still going strong,Looking  forward to reading your posts for  the next  26 years.BEAT the BEAST.      Al

          aldakota22
          Participant

            Charlie love reading your posts. As a veteran in this fight you have a perspective I hope to acheive one day. You may have lost some battles but you are still the victor in this war..TWENTY SIX YEARS and still going strong,Looking  forward to reading your posts for  the next  26 years.BEAT the BEAST.      Al

            aldakota22
            Participant

              Charlie love reading your posts. As a veteran in this fight you have a perspective I hope to acheive one day. You may have lost some battles but you are still the victor in this war..TWENTY SIX YEARS and still going strong,Looking  forward to reading your posts for  the next  26 years.BEAT the BEAST.      Al

              Lori C
              Participant

                Charlie, you are amazing.  I am very glad you are here and that you are participating in this forum; you were a great help to me when I was caregiving for Will and your lessons are ones I will carry with me.  Will's battle is over but I am sure to face more in the future, and your attitude and approach have been very helpful, always.  May you be kicking mel butt many decades to come.

                 

                Lori

                Lori C
                Participant

                  Charlie, you are amazing.  I am very glad you are here and that you are participating in this forum; you were a great help to me when I was caregiving for Will and your lessons are ones I will carry with me.  Will's battle is over but I am sure to face more in the future, and your attitude and approach have been very helpful, always.  May you be kicking mel butt many decades to come.

                   

                  Lori

                  Lori C
                  Participant

                    Charlie, you are amazing.  I am very glad you are here and that you are participating in this forum; you were a great help to me when I was caregiving for Will and your lessons are ones I will carry with me.  Will's battle is over but I am sure to face more in the future, and your attitude and approach have been very helpful, always.  May you be kicking mel butt many decades to come.

                     

                    Lori

                    mzeigler
                    Participant

                      Charlie,

                           Reading your post struck a nerve with me.  I lost my wife after 32 years of marriage to this monster.  My 2 sons and I think about this every single day of our lives.  When I read about you and Kim I was reminded how this disease hurts many across all different types of people's lives.  I salute your strength and courage in this fight.

                      Mike

                      mzeigler
                      Participant

                        Charlie,

                             Reading your post struck a nerve with me.  I lost my wife after 32 years of marriage to this monster.  My 2 sons and I think about this every single day of our lives.  When I read about you and Kim I was reminded how this disease hurts many across all different types of people's lives.  I salute your strength and courage in this fight.

                        Mike

                        mzeigler
                        Participant

                          Charlie,

                               Reading your post struck a nerve with me.  I lost my wife after 32 years of marriage to this monster.  My 2 sons and I think about this every single day of our lives.  When I read about you and Kim I was reminded how this disease hurts many across all different types of people's lives.  I salute your strength and courage in this fight.

                          Mike

                          Phil S
                          Participant
                            Charlie, Thanks for posting, wow 26 years that is truly amazing!! My husband, Phil and I have been in the fight 3 years 5 months, so I guess we are mere puppies, although it feels like forever. You have always given us hope! Also, I love your humor, your wit, your tell it like it is style, and your incredible optimism despite the toll melanoma has taken on your life. I wish us all, many, many years of fighting the Beast, and you have shown us it can be done! Happy 26th year!! Valerie
                            Phil S
                            Participant
                              Charlie, Thanks for posting, wow 26 years that is truly amazing!! My husband, Phil and I have been in the fight 3 years 5 months, so I guess we are mere puppies, although it feels like forever. You have always given us hope! Also, I love your humor, your wit, your tell it like it is style, and your incredible optimism despite the toll melanoma has taken on your life. I wish us all, many, many years of fighting the Beast, and you have shown us it can be done! Happy 26th year!! Valerie
                              Phil S
                              Participant
                                Charlie, Thanks for posting, wow 26 years that is truly amazing!! My husband, Phil and I have been in the fight 3 years 5 months, so I guess we are mere puppies, although it feels like forever. You have always given us hope! Also, I love your humor, your wit, your tell it like it is style, and your incredible optimism despite the toll melanoma has taken on your life. I wish us all, many, many years of fighting the Beast, and you have shown us it can be done! Happy 26th year!! Valerie
                                jcmp
                                Participant

                                  Way to go Charlie! 

                                  jcmp
                                  Participant

                                    Way to go Charlie! 

                                    jcmp
                                    Participant

                                      Way to go Charlie! 

                                      Bubbles
                                      Participant

                                        Way to go, Charlie!  I love it!!!  C

                                        Bubbles
                                        Participant

                                          Way to go, Charlie!  I love it!!!  C

                                          Bubbles
                                          Participant

                                            Way to go, Charlie!  I love it!!!  C

                                            mike_nj
                                            Participant

                                              Hi Charlie

                                              Always enjoy reading your posts and you give inspiration to the patients and caregivers who come to this site.

                                              Also, I want to thank you for your friendship to me and my family.  You have given us some great guidance on a number of issues.

                                              I very much miss the old board and the active chat that we had back around 2005-2008 or so, and I remember chatting with Kim and yourself and many others back then.  Every night, there was a roomfull and I don't know what happened but the chat is now dead, but maybe it can be revived.

                                              As you pointed out, many friends were lost to this disease and that memory is a sad one.

                                              See you

                                              Mike

                                              mike_nj
                                              Participant

                                                Hi Charlie

                                                Always enjoy reading your posts and you give inspiration to the patients and caregivers who come to this site.

                                                Also, I want to thank you for your friendship to me and my family.  You have given us some great guidance on a number of issues.

                                                I very much miss the old board and the active chat that we had back around 2005-2008 or so, and I remember chatting with Kim and yourself and many others back then.  Every night, there was a roomfull and I don't know what happened but the chat is now dead, but maybe it can be revived.

                                                As you pointed out, many friends were lost to this disease and that memory is a sad one.

                                                See you

                                                Mike

                                                mike_nj
                                                Participant

                                                  Hi Charlie

                                                  Always enjoy reading your posts and you give inspiration to the patients and caregivers who come to this site.

                                                  Also, I want to thank you for your friendship to me and my family.  You have given us some great guidance on a number of issues.

                                                  I very much miss the old board and the active chat that we had back around 2005-2008 or so, and I remember chatting with Kim and yourself and many others back then.  Every night, there was a roomfull and I don't know what happened but the chat is now dead, but maybe it can be revived.

                                                  As you pointed out, many friends were lost to this disease and that memory is a sad one.

                                                  See you

                                                  Mike

                                                  Cindy VT
                                                  Participant

                                                    Really Charlie,  You should write a book.  You are a survivor.

                                                     

                                                    Cindy VT Stage IIIB

                                                    Cindy VT
                                                    Participant

                                                      Really Charlie,  You should write a book.  You are a survivor.

                                                       

                                                      Cindy VT Stage IIIB

                                                      Cindy VT
                                                      Participant

                                                        Really Charlie,  You should write a book.  You are a survivor.

                                                         

                                                        Cindy VT Stage IIIB

                                                        Cindy VT
                                                        Participant

                                                          My doctor said that people like you and I are in a very tiny area in a book of the only 2% that survive this long.  Why do we survive?  I'd like to think its because ever since I've had this disease I've taken all my spirit and drive and anger out on it.  So it just won't get the best of me. 

                                                          My story isn't so lovely as yours.  I lost my husband to another woman, and pretty much my immediate family because they find it very hard to deal with.  I had alot of the side effects of the disease without the disease being active.  The stroke was really the last straw.  You can't go through all of this caustic stuff without problems.  I do pretty well hunting and pecking on the computer board.  I used to type 80 wpm.  I used to know all my appointments without an appointment book, know everyones telephone numbers, no everyones names.  In my community they actually asked if I would run for State Representative, but I couldn't.  I was sick. 

                                                          I was a wife of 35 years, a mother, a business woman, a person who care for her community.  I was a force to be reckoned with and now?  Now I'm doing the best I can.  No glorious love stories, but I'm glad you had that.  I wish I could have at least had that. 

                                                          When I went into the hospital for the fluid on my heart, my husband read that this was one of the last things that melanoma paitents get and usually they don't find it until an atopsy is done.  He was waiting for me to die because he had him self a woman 10 years younger than me on the side.  When I got through it, I was definitely upset, and two weeks later he left me, with nothing.  I was sick with no money, my adult kids were freakig out because of what happened and my son did what he could to help.  But he left me with no money and bills and it was absolutely hell.  Food stamps, no heat in the friggin sub zero temperature.  I couldnt get a person to fill up the oil tank because it cost 4.05 for a gallon, and you had to buy 100 gallons.  So I went to a place that sold diesel and filled up 5 gallon containers to pour into the tank. 

                                                          I'm doing better, I live in an apartment and I'm alone.  I went on this site because I wanted to see what new treatments there are since interferon and IL2. 

                                                          And now I'm going to the doctor for the pain in my back and chest probably fluid, but I hope not. 

                                                          You are 26, and I am 29, I'm sure there is a 30 or 32 out there as well. 

                                                          Anyway, your story is better than mine.  You are the survivor.  I really hope the best  for you.

                                                           

                                                          Cindy VT  Stage IIIB 29 and going.

                                                          Cindy VT
                                                          Participant

                                                            My doctor said that people like you and I are in a very tiny area in a book of the only 2% that survive this long.  Why do we survive?  I'd like to think its because ever since I've had this disease I've taken all my spirit and drive and anger out on it.  So it just won't get the best of me. 

                                                            My story isn't so lovely as yours.  I lost my husband to another woman, and pretty much my immediate family because they find it very hard to deal with.  I had alot of the side effects of the disease without the disease being active.  The stroke was really the last straw.  You can't go through all of this caustic stuff without problems.  I do pretty well hunting and pecking on the computer board.  I used to type 80 wpm.  I used to know all my appointments without an appointment book, know everyones telephone numbers, no everyones names.  In my community they actually asked if I would run for State Representative, but I couldn't.  I was sick. 

                                                            I was a wife of 35 years, a mother, a business woman, a person who care for her community.  I was a force to be reckoned with and now?  Now I'm doing the best I can.  No glorious love stories, but I'm glad you had that.  I wish I could have at least had that. 

                                                            When I went into the hospital for the fluid on my heart, my husband read that this was one of the last things that melanoma paitents get and usually they don't find it until an atopsy is done.  He was waiting for me to die because he had him self a woman 10 years younger than me on the side.  When I got through it, I was definitely upset, and two weeks later he left me, with nothing.  I was sick with no money, my adult kids were freakig out because of what happened and my son did what he could to help.  But he left me with no money and bills and it was absolutely hell.  Food stamps, no heat in the friggin sub zero temperature.  I couldnt get a person to fill up the oil tank because it cost 4.05 for a gallon, and you had to buy 100 gallons.  So I went to a place that sold diesel and filled up 5 gallon containers to pour into the tank. 

                                                            I'm doing better, I live in an apartment and I'm alone.  I went on this site because I wanted to see what new treatments there are since interferon and IL2. 

                                                            And now I'm going to the doctor for the pain in my back and chest probably fluid, but I hope not. 

                                                            You are 26, and I am 29, I'm sure there is a 30 or 32 out there as well. 

                                                            Anyway, your story is better than mine.  You are the survivor.  I really hope the best  for you.

                                                             

                                                            Cindy VT  Stage IIIB 29 and going.

                                                            Cindy VT
                                                            Participant

                                                              My doctor said that people like you and I are in a very tiny area in a book of the only 2% that survive this long.  Why do we survive?  I'd like to think its because ever since I've had this disease I've taken all my spirit and drive and anger out on it.  So it just won't get the best of me. 

                                                              My story isn't so lovely as yours.  I lost my husband to another woman, and pretty much my immediate family because they find it very hard to deal with.  I had alot of the side effects of the disease without the disease being active.  The stroke was really the last straw.  You can't go through all of this caustic stuff without problems.  I do pretty well hunting and pecking on the computer board.  I used to type 80 wpm.  I used to know all my appointments without an appointment book, know everyones telephone numbers, no everyones names.  In my community they actually asked if I would run for State Representative, but I couldn't.  I was sick. 

                                                              I was a wife of 35 years, a mother, a business woman, a person who care for her community.  I was a force to be reckoned with and now?  Now I'm doing the best I can.  No glorious love stories, but I'm glad you had that.  I wish I could have at least had that. 

                                                              When I went into the hospital for the fluid on my heart, my husband read that this was one of the last things that melanoma paitents get and usually they don't find it until an atopsy is done.  He was waiting for me to die because he had him self a woman 10 years younger than me on the side.  When I got through it, I was definitely upset, and two weeks later he left me, with nothing.  I was sick with no money, my adult kids were freakig out because of what happened and my son did what he could to help.  But he left me with no money and bills and it was absolutely hell.  Food stamps, no heat in the friggin sub zero temperature.  I couldnt get a person to fill up the oil tank because it cost 4.05 for a gallon, and you had to buy 100 gallons.  So I went to a place that sold diesel and filled up 5 gallon containers to pour into the tank. 

                                                              I'm doing better, I live in an apartment and I'm alone.  I went on this site because I wanted to see what new treatments there are since interferon and IL2. 

                                                              And now I'm going to the doctor for the pain in my back and chest probably fluid, but I hope not. 

                                                              You are 26, and I am 29, I'm sure there is a 30 or 32 out there as well. 

                                                              Anyway, your story is better than mine.  You are the survivor.  I really hope the best  for you.

                                                               

                                                              Cindy VT  Stage IIIB 29 and going.

                                                              Swanee
                                                              Participant

                                                                When I first discovered MPIP the very first post I read was "roll call"  posted by you, Charlie,  and what a roll call it was.  You prompted all the Stage IV survivors to come out and tell their story as Charlie said "there's been to much dying going on around here" and we need to hear from stage IV survivors!  That roll call was amazing and gave me so much hope, knowing there were so many who were in battle or had been for many years, that was 3 years ago for me.  Since then, I've learned the reason we don't hear from the survivors like we do those who are in battle right now is they are off living, until if or when the time they are once again drawn back to this website!

                                                                I would like to give a big shout out and Thank you to you Charlie for being out there with your solid, methodical and to the point advice and comments, I always enjoy what you have to say and listen carefully to your advice.  There are so many others on MPIP who continually respond to patients questions with knowledge and concern and I am so grateful for all of you,  helping so many of us find our way through this melanoma maze!

                                                                You are my mentor Charlie, joining you in the zero club!

                                                                Swanee
                                                                Participant

                                                                  When I first discovered MPIP the very first post I read was "roll call"  posted by you, Charlie,  and what a roll call it was.  You prompted all the Stage IV survivors to come out and tell their story as Charlie said "there's been to much dying going on around here" and we need to hear from stage IV survivors!  That roll call was amazing and gave me so much hope, knowing there were so many who were in battle or had been for many years, that was 3 years ago for me.  Since then, I've learned the reason we don't hear from the survivors like we do those who are in battle right now is they are off living, until if or when the time they are once again drawn back to this website!

                                                                  I would like to give a big shout out and Thank you to you Charlie for being out there with your solid, methodical and to the point advice and comments, I always enjoy what you have to say and listen carefully to your advice.  There are so many others on MPIP who continually respond to patients questions with knowledge and concern and I am so grateful for all of you,  helping so many of us find our way through this melanoma maze!

                                                                  You are my mentor Charlie, joining you in the zero club!

                                                                  Swanee
                                                                  Participant

                                                                    When I first discovered MPIP the very first post I read was "roll call"  posted by you, Charlie,  and what a roll call it was.  You prompted all the Stage IV survivors to come out and tell their story as Charlie said "there's been to much dying going on around here" and we need to hear from stage IV survivors!  That roll call was amazing and gave me so much hope, knowing there were so many who were in battle or had been for many years, that was 3 years ago for me.  Since then, I've learned the reason we don't hear from the survivors like we do those who are in battle right now is they are off living, until if or when the time they are once again drawn back to this website!

                                                                    I would like to give a big shout out and Thank you to you Charlie for being out there with your solid, methodical and to the point advice and comments, I always enjoy what you have to say and listen carefully to your advice.  There are so many others on MPIP who continually respond to patients questions with knowledge and concern and I am so grateful for all of you,  helping so many of us find our way through this melanoma maze!

                                                                    You are my mentor Charlie, joining you in the zero club!

                                                                    JerryfromFauq
                                                                    Participant

                                                                      Charlie is indeed a very special Man.  He has meant so much to me in my baattle and my learning in this fight. 

                                                                      Love you, My Friend.

                                                                      JerryfromFauq
                                                                      Participant

                                                                        Charlie is indeed a very special Man.  He has meant so much to me in my baattle and my learning in this fight. 

                                                                        Love you, My Friend.

                                                                        JerryfromFauq
                                                                        Participant

                                                                          Charlie is indeed a very special Man.  He has meant so much to me in my baattle and my learning in this fight. 

                                                                          Love you, My Friend.

                                                                          kylez
                                                                          Participant

                                                                            Hi Charlie,

                                                                             

                                                                            When you post I alwasy pay attention.

                                                                            Once in a hallucinatory state during my 3rd or 4th IL-2 cycle, I half-dreamd, and half-experienced — not so much "IL-2" but some kind of entity with ties to life itself and what the IL-2 treatment might or might not do for me. I've only rarely experienced powerful dreams as that. 

                                                                            I listen, agree usually, and respect what you say, Charlie. Melanoma never soft-pedals us. Just so, you always seem very committed to telling things as you see them, rather than soft-pedaling it. Not everybody is built to do that. You also try to pull people back from the brink who are scared but not necessarily in as much of a danger zone as they currently think.

                                                                            Congrats on 26. 

                                                                            kylez
                                                                            Participant

                                                                              Hi Charlie,

                                                                               

                                                                              When you post I alwasy pay attention.

                                                                              Once in a hallucinatory state during my 3rd or 4th IL-2 cycle, I half-dreamd, and half-experienced — not so much "IL-2" but some kind of entity with ties to life itself and what the IL-2 treatment might or might not do for me. I've only rarely experienced powerful dreams as that. 

                                                                              I listen, agree usually, and respect what you say, Charlie. Melanoma never soft-pedals us. Just so, you always seem very committed to telling things as you see them, rather than soft-pedaling it. Not everybody is built to do that. You also try to pull people back from the brink who are scared but not necessarily in as much of a danger zone as they currently think.

                                                                              Congrats on 26. 

                                                                              kylez
                                                                              Participant

                                                                                Hi Charlie,

                                                                                 

                                                                                When you post I alwasy pay attention.

                                                                                Once in a hallucinatory state during my 3rd or 4th IL-2 cycle, I half-dreamd, and half-experienced — not so much "IL-2" but some kind of entity with ties to life itself and what the IL-2 treatment might or might not do for me. I've only rarely experienced powerful dreams as that. 

                                                                                I listen, agree usually, and respect what you say, Charlie. Melanoma never soft-pedals us. Just so, you always seem very committed to telling things as you see them, rather than soft-pedaling it. Not everybody is built to do that. You also try to pull people back from the brink who are scared but not necessarily in as much of a danger zone as they currently think.

                                                                                Congrats on 26. 

                                                                                JuleFL
                                                                                Participant
                                                                                  Charlie, you are awesome! Thank you for this post. And congrats for hanging around and giving mel (and a few others) hell!

                                                                                  Jule (Cal’s wife)

                                                                                  JuleFL
                                                                                  Participant
                                                                                    Charlie, you are awesome! Thank you for this post. And congrats for hanging around and giving mel (and a few others) hell!

                                                                                    Jule (Cal’s wife)

                                                                                    JuleFL
                                                                                    Participant
                                                                                      Charlie, you are awesome! Thank you for this post. And congrats for hanging around and giving mel (and a few others) hell!

                                                                                      Jule (Cal’s wife)

                                                                                      awillett1991
                                                                                      Participant
                                                                                        Charlie – I always love your posts. You are a true warrior! Myself am over 3 years in, and somewhere soon between a miraculous turnaround and a dirt nap. I will never give up, never forget to be grateful and appreciate each day.

                                                                                        Amy

                                                                                        awillett1991
                                                                                        Participant
                                                                                          Charlie – I always love your posts. You are a true warrior! Myself am over 3 years in, and somewhere soon between a miraculous turnaround and a dirt nap. I will never give up, never forget to be grateful and appreciate each day.

                                                                                          Amy

                                                                                          awillett1991
                                                                                          Participant
                                                                                            Charlie – I always love your posts. You are a true warrior! Myself am over 3 years in, and somewhere soon between a miraculous turnaround and a dirt nap. I will never give up, never forget to be grateful and appreciate each day.

                                                                                            Amy

                                                                                            Brendan
                                                                                            Participant

                                                                                              Hi Charlie,

                                                                                              Thanks for sharing your success story, it helps us all.

                                                                                              Cheers,

                                                                                              Brendan

                                                                                              Brendan
                                                                                              Participant

                                                                                                Hi Charlie,

                                                                                                Thanks for sharing your success story, it helps us all.

                                                                                                Cheers,

                                                                                                Brendan

                                                                                                Brendan
                                                                                                Participant

                                                                                                  Hi Charlie,

                                                                                                  Thanks for sharing your success story, it helps us all.

                                                                                                  Cheers,

                                                                                                  Brendan

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