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Stage 4 NED long-term survivors sound off

Forums General Melanoma Community Stage 4 NED long-term survivors sound off

  • Post
    dodgedh2
    Participant

      I was originally diagnosed at Stage 4 (met to bone) w/unknown primary. Following resection and gamma radiation treatment at surgery, I have been NED for just over 6 years now. My Onc released me from oncology and turned me over to PC for monitoring. No scans (unless I have symptoms or some other reason to suspect return). I'd like to hear from other long-term, late stage NED survivors. Has anyone experienced long-term NED then had recurrence? How long were you NED? Just going through one of those periodic anxiety moments about having survived Stage 4 and looking over my shoulder again.

    Viewing 29 reply threads
    • Replies
        Cooper
        Participant

          Here's a video with 6 doing well at stage 4: http://melanomainternational.org/events-webinar/patient-experience-video

            chaseo
            Participant

              thank you so much for referencing that video!

              chaseo
              Participant

                thank you so much for referencing that video!

                chaseo
                Participant

                  thank you so much for referencing that video!

                Cooper
                Participant

                  Here's a video with 6 doing well at stage 4: http://melanomainternational.org/events-webinar/patient-experience-video

                  Cooper
                  Participant

                    Here's a video with 6 doing well at stage 4: http://melanomainternational.org/events-webinar/patient-experience-video

                    Kim K
                    Participant

                      NED since July 2010.

                      VATS – wedge lung resection followed by 23 bags of IL-2, complete responder :).

                      I only had a lung met & small met in my pectoralis muscle.  Went from stage IIA to stage IV 8 years later.  Hopefully the newer drugs will also show durable remissions like the IL-2, but with greater than IL-2's 3% durable remission rate.

                      Kim K
                      Participant

                        NED since July 2010.

                        VATS – wedge lung resection followed by 23 bags of IL-2, complete responder :).

                        I only had a lung met & small met in my pectoralis muscle.  Went from stage IIA to stage IV 8 years later.  Hopefully the newer drugs will also show durable remissions like the IL-2, but with greater than IL-2's 3% durable remission rate.

                        Kim K
                        Participant

                          NED since July 2010.

                          VATS – wedge lung resection followed by 23 bags of IL-2, complete responder :).

                          I only had a lung met & small met in my pectoralis muscle.  Went from stage IIA to stage IV 8 years later.  Hopefully the newer drugs will also show durable remissions like the IL-2, but with greater than IL-2's 3% durable remission rate.

                          Rebecca and Bob
                          Participant

                            My husband was Stage III Begining 2007 and stage IV begining of 2008, NED for 5 years. He had nodules in lungs, subq and small intestine. He had a vaccine, IL-2  response in 2008 then surgery to remove small intestine tumors.

                            We all still look over our shoulder but still enjoying all these extra years with our kids getting bigger and just enjoying everything we can.

                            Rebecca

                              Rebecca and Bob
                              Participant

                                sorry, just realized my spelling of beginning is wrong. So I can't spell. πŸ™‚

                                Rebecca and Bob
                                Participant

                                  sorry, just realized my spelling of beginning is wrong. So I can't spell. πŸ™‚

                                  Rebecca and Bob
                                  Participant

                                    sorry, just realized my spelling of beginning is wrong. So I can't spell. πŸ™‚

                                  Rebecca and Bob
                                  Participant

                                    My husband was Stage III Begining 2007 and stage IV begining of 2008, NED for 5 years. He had nodules in lungs, subq and small intestine. He had a vaccine, IL-2  response in 2008 then surgery to remove small intestine tumors.

                                    We all still look over our shoulder but still enjoying all these extra years with our kids getting bigger and just enjoying everything we can.

                                    Rebecca

                                    Rebecca and Bob
                                    Participant

                                      My husband was Stage III Begining 2007 and stage IV begining of 2008, NED for 5 years. He had nodules in lungs, subq and small intestine. He had a vaccine, IL-2  response in 2008 then surgery to remove small intestine tumors.

                                      We all still look over our shoulder but still enjoying all these extra years with our kids getting bigger and just enjoying everything we can.

                                      Rebecca

                                      Rocco
                                      Participant

                                        Hi there –

                                        Still very much here and NED!  Dx Stage IV from unknown primary in Aug 2005, many surgeries and treatments until a full response from IPI in 2009.

                                        Hang in there everyone!

                                          Nell
                                          Participant

                                            This is so encouraging to me…and many others as well, I am sure.  Ready for my third infusion of ipi tomorrow…Praying that I will be blessed with a full response!  Thank you for sharing your success story, and may you continue to be NED.

                                            Nell
                                            Participant

                                              This is so encouraging to me…and many others as well, I am sure.  Ready for my third infusion of ipi tomorrow…Praying that I will be blessed with a full response!  Thank you for sharing your success story, and may you continue to be NED.

                                              Nell
                                              Participant

                                                This is so encouraging to me…and many others as well, I am sure.  Ready for my third infusion of ipi tomorrow…Praying that I will be blessed with a full response!  Thank you for sharing your success story, and may you continue to be NED.

                                              Rocco
                                              Participant

                                                Hi there –

                                                Still very much here and NED!  Dx Stage IV from unknown primary in Aug 2005, many surgeries and treatments until a full response from IPI in 2009.

                                                Hang in there everyone!

                                                Rocco
                                                Participant

                                                  Hi there –

                                                  Still very much here and NED!  Dx Stage IV from unknown primary in Aug 2005, many surgeries and treatments until a full response from IPI in 2009.

                                                  Hang in there everyone!

                                                  shz1256
                                                  Participant

                                                    I really needed to read this too. I was stage III for 3 years until 2 weeks ago when a routine PET caught a single codule in my lung. I'm going to have a resection next week and am looking forward to trying to stay NED for as long as possible.

                                                    shz1256
                                                    Participant

                                                      I really needed to read this too. I was stage III for 3 years until 2 weeks ago when a routine PET caught a single codule in my lung. I'm going to have a resection next week and am looking forward to trying to stay NED for as long as possible.

                                                      shz1256
                                                      Participant

                                                        I really needed to read this too. I was stage III for 3 years until 2 weeks ago when a routine PET caught a single codule in my lung. I'm going to have a resection next week and am looking forward to trying to stay NED for as long as possible.

                                                        dodgedh2
                                                        Participant

                                                          Always helps to hear from other long-term survivors. I'm glad to have this period of NED. I'm currently a little down and worrying if and when this might come back. I didn't have any symptoms initially, except for extreme fatigue. We happened to find my met by accident when a scan was performed for another issue. I guess what triggered this round of depression is that I've been feeling fatigued again (no other symptoms) and it is brining back memories.

                                                          Has anyone been NED for a long period and had MM return? Did you notice anything different?

                                                            CHD
                                                            Participant

                                                              I too have wanted to hear of people's experiences with this and actually started a thread awhile back hoping to hear from people whose melanoma had returned… wanted to know what the warning signs might have been, how it was detected. I do get anxious too, and I thought it might be educational and helpful for so many of us.

                                                              CHD
                                                              Participant

                                                                I too have wanted to hear of people's experiences with this and actually started a thread awhile back hoping to hear from people whose melanoma had returned… wanted to know what the warning signs might have been, how it was detected. I do get anxious too, and I thought it might be educational and helpful for so many of us.

                                                                CHD
                                                                Participant

                                                                  I too have wanted to hear of people's experiences with this and actually started a thread awhile back hoping to hear from people whose melanoma had returned… wanted to know what the warning signs might have been, how it was detected. I do get anxious too, and I thought it might be educational and helpful for so many of us.

                                                                dodgedh2
                                                                Participant

                                                                  Always helps to hear from other long-term survivors. I'm glad to have this period of NED. I'm currently a little down and worrying if and when this might come back. I didn't have any symptoms initially, except for extreme fatigue. We happened to find my met by accident when a scan was performed for another issue. I guess what triggered this round of depression is that I've been feeling fatigued again (no other symptoms) and it is brining back memories.

                                                                  Has anyone been NED for a long period and had MM return? Did you notice anything different?

                                                                  dodgedh2
                                                                  Participant

                                                                    Always helps to hear from other long-term survivors. I'm glad to have this period of NED. I'm currently a little down and worrying if and when this might come back. I didn't have any symptoms initially, except for extreme fatigue. We happened to find my met by accident when a scan was performed for another issue. I guess what triggered this round of depression is that I've been feeling fatigued again (no other symptoms) and it is brining back memories.

                                                                    Has anyone been NED for a long period and had MM return? Did you notice anything different?

                                                                    G-Samsa
                                                                    Participant

                                                                      I'd like to broaden this topic, if I can.  I believe that the new immunotherapy drugs are going to result in a large number of Stage IV survivors who are NOT NED .  A scary proposition ( a constant reminder kept at-bay within them). There is certainly a need for separate support — recognition and solidarity.  ( OK so I'm envious of you NED folk) I am one of the original 53 trial participants in the Nivo-Ipi trials that had the follow-up report at ASCO this spring.  I go off trial soon.  The doctors predict (as I am nudged forward) that my immune system has learned to contain the melanoma and they fully expect me to continue in a stable state ( melanoma reduced by 50 percent)  I achieved this level early on  — now nearing two years stable.  If what the doctors say is true— that the drugs can do nothing more for me- there should eventually be a large number of us that have a chronic disease– stable with some pain and other symptoms — but contained but for the fear.

                                                                       

                                                                        rick1981
                                                                        Participant

                                                                          Great to hear your positive, NED stories! Happy for all of you…. πŸ™‚

                                                                          Could you indicate which treatment / meds (or alternative therapies / supplements) helped you achieve that status?

                                                                          Thanks, Rick

                                                                          Mango
                                                                          Participant

                                                                            Hi Rick ~

                                                                            I was diagnosed with stage iv in 8/2001. I had surgery on my arm and thigh as well as removal of dozens and dozens of lymph nodes in various places (they wanted to remove my arm, but I would not let them), as well as the partial removal of my liver where there was evidence of disease. I did 158 treatments of high dose interferon (5x/ week for 4 weeks, then 3x/week for 46 weeks; I quit before completeing the last 2 weeks which would have been a full 52 weeks). I was down to 72 pounds. The treatment was brutal. The drugs to counteract the side effects from the INF were dastardly!!!  I immediately felt better after stopping the interferon. I went back to eating my normal, healthy diet (I have always eaten pretty healthy). The results were immediate, at least physically. The mental toll this drug took on me took years to go away, though I still have severe bouts with "chemo fog", which sucks, but I now find humor in it.

                                                                            My life is now somewhat normal (though that term is relative where I am concerned ~ HA!). I always have and always will swear my mental attitude was a key factor in my survival through this. I believe in a higher power, I meditate, I believe in eastern medicine v. western medicine, but mostly I don't take anything at all, an occasional aspirin here or there. 

                                                                            I wish every single soul on this site the absolute best in their journey with this disease. It aint pretty. 

                                                                            Kindest Regards, Mango

                                                                             

                                                                             

                                                                             

                                                                            Mango
                                                                            Participant

                                                                              Hi Rick ~

                                                                              I was diagnosed with stage iv in 8/2001. I had surgery on my arm and thigh as well as removal of dozens and dozens of lymph nodes in various places (they wanted to remove my arm, but I would not let them), as well as the partial removal of my liver where there was evidence of disease. I did 158 treatments of high dose interferon (5x/ week for 4 weeks, then 3x/week for 46 weeks; I quit before completeing the last 2 weeks which would have been a full 52 weeks). I was down to 72 pounds. The treatment was brutal. The drugs to counteract the side effects from the INF were dastardly!!!  I immediately felt better after stopping the interferon. I went back to eating my normal, healthy diet (I have always eaten pretty healthy). The results were immediate, at least physically. The mental toll this drug took on me took years to go away, though I still have severe bouts with "chemo fog", which sucks, but I now find humor in it.

                                                                              My life is now somewhat normal (though that term is relative where I am concerned ~ HA!). I always have and always will swear my mental attitude was a key factor in my survival through this. I believe in a higher power, I meditate, I believe in eastern medicine v. western medicine, but mostly I don't take anything at all, an occasional aspirin here or there. 

                                                                              I wish every single soul on this site the absolute best in their journey with this disease. It aint pretty. 

                                                                              Kindest Regards, Mango

                                                                               

                                                                               

                                                                               

                                                                              Mango
                                                                              Participant

                                                                                Hi Rick ~

                                                                                I was diagnosed with stage iv in 8/2001. I had surgery on my arm and thigh as well as removal of dozens and dozens of lymph nodes in various places (they wanted to remove my arm, but I would not let them), as well as the partial removal of my liver where there was evidence of disease. I did 158 treatments of high dose interferon (5x/ week for 4 weeks, then 3x/week for 46 weeks; I quit before completeing the last 2 weeks which would have been a full 52 weeks). I was down to 72 pounds. The treatment was brutal. The drugs to counteract the side effects from the INF were dastardly!!!  I immediately felt better after stopping the interferon. I went back to eating my normal, healthy diet (I have always eaten pretty healthy). The results were immediate, at least physically. The mental toll this drug took on me took years to go away, though I still have severe bouts with "chemo fog", which sucks, but I now find humor in it.

                                                                                My life is now somewhat normal (though that term is relative where I am concerned ~ HA!). I always have and always will swear my mental attitude was a key factor in my survival through this. I believe in a higher power, I meditate, I believe in eastern medicine v. western medicine, but mostly I don't take anything at all, an occasional aspirin here or there. 

                                                                                I wish every single soul on this site the absolute best in their journey with this disease. It aint pretty. 

                                                                                Kindest Regards, Mango

                                                                                 

                                                                                 

                                                                                 

                                                                                rick1981
                                                                                Participant

                                                                                  Great to hear your positive, NED stories! Happy for all of you…. πŸ™‚

                                                                                  Could you indicate which treatment / meds (or alternative therapies / supplements) helped you achieve that status?

                                                                                  Thanks, Rick

                                                                                  rick1981
                                                                                  Participant

                                                                                    Great to hear your positive, NED stories! Happy for all of you…. πŸ™‚

                                                                                    Could you indicate which treatment / meds (or alternative therapies / supplements) helped you achieve that status?

                                                                                    Thanks, Rick

                                                                                    Maureen038
                                                                                    Participant

                                                                                      What a great idea! Please keep doing this because it inspires all stage 4 patients and gives us all hope. I especially agree with immunotherapy being the best treatment now that there will be so many more stage 4 patients stable, but not NED. 

                                                                                      Maureen

                                                                                      Maureen038
                                                                                      Participant

                                                                                        What a great idea! Please keep doing this because it inspires all stage 4 patients and gives us all hope. I especially agree with immunotherapy being the best treatment now that there will be so many more stage 4 patients stable, but not NED. 

                                                                                        Maureen

                                                                                        Maureen038
                                                                                        Participant

                                                                                          What a great idea! Please keep doing this because it inspires all stage 4 patients and gives us all hope. I especially agree with immunotherapy being the best treatment now that there will be so many more stage 4 patients stable, but not NED. 

                                                                                          Maureen

                                                                                          RJoeyB
                                                                                          Participant

                                                                                            G-Samsa, good idea for another thread.  I've been thinking about posting something similar for a little while now, too, based on the odd place I find myself in right now, and maybe I'll post something more in the coming days.  It's by no means meant to be an affront to anyone who has been declared NED.  Your stories are inspiring and should absolutely be shared!

                                                                                            I'll write more later, but at 4+ years of Stage IV, three different immunotherapies, mets in pretty much every corner of my body, radiation, surgery, etc., I can oddly say I've been fortunate to never have had very high tumor burden.  No one has come close to saying NED and it's not something we expect to hear any time soon, yet it feels like we've "danced" with it a little.  There are going to be NED stories, and there are a handful of doctors who, with an overabundance of caution, even whisper "cure."  But there are going to be more and more of us for whom the best comparison is management of chronic disease — but chronic disease that has a terrible reputation for turning for the worst very quickly.  This has a whole range of socioeconomic impact on how those of us and our loved ones live our lives, raise our families, work and earn a living, plan for the future, etc., without being able to truly put melanoma in our past.  I know those who have been told they are NED deal with this to varying degrees, too.  It's a survivorship issue that is worth talking about.

                                                                                            Joe

                                                                                            Phil S
                                                                                            Participant

                                                                                              I also agree that these kinds of posts are helpful.  Years ago, Charlie did a roll call of the Stage 4 warriors who were in the battle, and I read it regularly back then for support and strength. Unfortunately, new people visit this website all the time, as those affected by melanoma grows. They need to see hope!!  So, my husband, Phil is over three years Stage 4 and doing well. He has never been NED at stage 4, but has had a great response to TIL, which has kept him stable over 2 years now. I never really cared about getting to NED, as long as his body can keep this disease in check, he has no symptoms from his tumors, they stay small. So, we just keep on living life, raising our kids, enjoying our days, but keep ourselves educated on melanoma, get scanned, and travel to great melanoma doctors.  When, we started our battle, Yervoy wasn't FDA approved yet, now we are looking at AntiPD1 being approved soon. More treatment Options are available, let's all keep fighting!!   Valerie (Phil's wife)

                                                                                              Phil S
                                                                                              Participant

                                                                                                I also agree that these kinds of posts are helpful.  Years ago, Charlie did a roll call of the Stage 4 warriors who were in the battle, and I read it regularly back then for support and strength. Unfortunately, new people visit this website all the time, as those affected by melanoma grows. They need to see hope!!  So, my husband, Phil is over three years Stage 4 and doing well. He has never been NED at stage 4, but has had a great response to TIL, which has kept him stable over 2 years now. I never really cared about getting to NED, as long as his body can keep this disease in check, he has no symptoms from his tumors, they stay small. So, we just keep on living life, raising our kids, enjoying our days, but keep ourselves educated on melanoma, get scanned, and travel to great melanoma doctors.  When, we started our battle, Yervoy wasn't FDA approved yet, now we are looking at AntiPD1 being approved soon. More treatment Options are available, let's all keep fighting!!   Valerie (Phil's wife)

                                                                                                Phil S
                                                                                                Participant

                                                                                                  I also agree that these kinds of posts are helpful.  Years ago, Charlie did a roll call of the Stage 4 warriors who were in the battle, and I read it regularly back then for support and strength. Unfortunately, new people visit this website all the time, as those affected by melanoma grows. They need to see hope!!  So, my husband, Phil is over three years Stage 4 and doing well. He has never been NED at stage 4, but has had a great response to TIL, which has kept him stable over 2 years now. I never really cared about getting to NED, as long as his body can keep this disease in check, he has no symptoms from his tumors, they stay small. So, we just keep on living life, raising our kids, enjoying our days, but keep ourselves educated on melanoma, get scanned, and travel to great melanoma doctors.  When, we started our battle, Yervoy wasn't FDA approved yet, now we are looking at AntiPD1 being approved soon. More treatment Options are available, let's all keep fighting!!   Valerie (Phil's wife)

                                                                                                  G-Samsa
                                                                                                  Participant

                                                                                                    Well stated Joe!  I am also "cornered" with Mel at-bay in every niche and living  this  sudden new existence with fears of insurance denial that dwarf any health concerns — my handle (G-Samsa) relates to the Kafka story– which was exactly how I felt when I first encountered this community.   It almost feels like the late 80s when AIDS burst on the scene and clearing house organizations began to develop to address both medical, informational  and social  needs of the population.  

                                                                                                    starletwoman2007
                                                                                                    Participant
                                                                                                      How many of you have had brain mets? I have a feeling will never get ned cos of this and more my immunotherapy won’t work in it
                                                                                                      starletwoman2007
                                                                                                      Participant
                                                                                                        How many of you have had brain mets? I have a feeling will never get ned cos of this and more my immunotherapy won’t work in it
                                                                                                        starletwoman2007
                                                                                                        Participant
                                                                                                          How many of you have had brain mets? I have a feeling will never get ned cos of this and more my immunotherapy won’t work in it
                                                                                                          G-Samsa
                                                                                                          Participant

                                                                                                            Well stated Joe!  I am also "cornered" with Mel at-bay in every niche and living  this  sudden new existence with fears of insurance denial that dwarf any health concerns — my handle (G-Samsa) relates to the Kafka story– which was exactly how I felt when I first encountered this community.   It almost feels like the late 80s when AIDS burst on the scene and clearing house organizations began to develop to address both medical, informational  and social  needs of the population.  

                                                                                                            G-Samsa
                                                                                                            Participant

                                                                                                              Well stated Joe!  I am also "cornered" with Mel at-bay in every niche and living  this  sudden new existence with fears of insurance denial that dwarf any health concerns — my handle (G-Samsa) relates to the Kafka story– which was exactly how I felt when I first encountered this community.   It almost feels like the late 80s when AIDS burst on the scene and clearing house organizations began to develop to address both medical, informational  and social  needs of the population.  

                                                                                                              RJoeyB
                                                                                                              Participant

                                                                                                                G-Samsa, good idea for another thread.  I've been thinking about posting something similar for a little while now, too, based on the odd place I find myself in right now, and maybe I'll post something more in the coming days.  It's by no means meant to be an affront to anyone who has been declared NED.  Your stories are inspiring and should absolutely be shared!

                                                                                                                I'll write more later, but at 4+ years of Stage IV, three different immunotherapies, mets in pretty much every corner of my body, radiation, surgery, etc., I can oddly say I've been fortunate to never have had very high tumor burden.  No one has come close to saying NED and it's not something we expect to hear any time soon, yet it feels like we've "danced" with it a little.  There are going to be NED stories, and there are a handful of doctors who, with an overabundance of caution, even whisper "cure."  But there are going to be more and more of us for whom the best comparison is management of chronic disease — but chronic disease that has a terrible reputation for turning for the worst very quickly.  This has a whole range of socioeconomic impact on how those of us and our loved ones live our lives, raise our families, work and earn a living, plan for the future, etc., without being able to truly put melanoma in our past.  I know those who have been told they are NED deal with this to varying degrees, too.  It's a survivorship issue that is worth talking about.

                                                                                                                Joe

                                                                                                                RJoeyB
                                                                                                                Participant

                                                                                                                  G-Samsa, good idea for another thread.  I've been thinking about posting something similar for a little while now, too, based on the odd place I find myself in right now, and maybe I'll post something more in the coming days.  It's by no means meant to be an affront to anyone who has been declared NED.  Your stories are inspiring and should absolutely be shared!

                                                                                                                  I'll write more later, but at 4+ years of Stage IV, three different immunotherapies, mets in pretty much every corner of my body, radiation, surgery, etc., I can oddly say I've been fortunate to never have had very high tumor burden.  No one has come close to saying NED and it's not something we expect to hear any time soon, yet it feels like we've "danced" with it a little.  There are going to be NED stories, and there are a handful of doctors who, with an overabundance of caution, even whisper "cure."  But there are going to be more and more of us for whom the best comparison is management of chronic disease — but chronic disease that has a terrible reputation for turning for the worst very quickly.  This has a whole range of socioeconomic impact on how those of us and our loved ones live our lives, raise our families, work and earn a living, plan for the future, etc., without being able to truly put melanoma in our past.  I know those who have been told they are NED deal with this to varying degrees, too.  It's a survivorship issue that is worth talking about.

                                                                                                                  Joe

                                                                                                                G-Samsa
                                                                                                                Participant

                                                                                                                  I'd like to broaden this topic, if I can.  I believe that the new immunotherapy drugs are going to result in a large number of Stage IV survivors who are NOT NED .  A scary proposition ( a constant reminder kept at-bay within them). There is certainly a need for separate support — recognition and solidarity.  ( OK so I'm envious of you NED folk) I am one of the original 53 trial participants in the Nivo-Ipi trials that had the follow-up report at ASCO this spring.  I go off trial soon.  The doctors predict (as I am nudged forward) that my immune system has learned to contain the melanoma and they fully expect me to continue in a stable state ( melanoma reduced by 50 percent)  I achieved this level early on  — now nearing two years stable.  If what the doctors say is true— that the drugs can do nothing more for me- there should eventually be a large number of us that have a chronic disease– stable with some pain and other symptoms — but contained but for the fear.

                                                                                                                   

                                                                                                                  G-Samsa
                                                                                                                  Participant

                                                                                                                    I'd like to broaden this topic, if I can.  I believe that the new immunotherapy drugs are going to result in a large number of Stage IV survivors who are NOT NED .  A scary proposition ( a constant reminder kept at-bay within them). There is certainly a need for separate support — recognition and solidarity.  ( OK so I'm envious of you NED folk) I am one of the original 53 trial participants in the Nivo-Ipi trials that had the follow-up report at ASCO this spring.  I go off trial soon.  The doctors predict (as I am nudged forward) that my immune system has learned to contain the melanoma and they fully expect me to continue in a stable state ( melanoma reduced by 50 percent)  I achieved this level early on  — now nearing two years stable.  If what the doctors say is true— that the drugs can do nothing more for me- there should eventually be a large number of us that have a chronic disease– stable with some pain and other symptoms — but contained but for the fear.

                                                                                                                     

                                                                                                                    Mango
                                                                                                                    Participant

                                                                                                                      I was diagnosed with stage iv in August of 2001. During surgery, they woke me up to tell me they wanted to remove my arm. I would not let them. The usual nightmare ensued (fear, anger, denial, etc.). I had bouts of extreme paranoia with any new spot on my body for the first few years after diagnosis. I have biopsy scars everywhere! I finally got sick of all the diatribe my onc was throwing at me and I ceased going. I did find another onc about 5 years after initial diagnosis; I went to her once. She was quite compentent, I simply did not want to know anymore. I had already survived much longer than anyone thought I would. The mental anguish with this, or any other fatal disease, is just too much. I would rather live my life LIVING! Yes, I do have occassional bouts of paranoia when I think I have a new spot. I take pictures, document, etc. None of them have turned out to be anything. I wish I could forget this ever happened. I feel like I live in the twilight zone sometimes. Sadly, the few people I met during this part of my life who were going through the same thing have all succomned to the disease. I rarely tell new people in my life about this anymore. It just seems like it was a different lifetime, it happened to a different person. The reason I came here today was because a friend just got diagnosed and she is having a really hard time with her diagnosis. My heart goes out to all who have been affected by this and all other cancers. I wish you all love.

                                                                                                                      Mango
                                                                                                                      Participant

                                                                                                                        I was diagnosed with stage iv in August of 2001. During surgery, they woke me up to tell me they wanted to remove my arm. I would not let them. The usual nightmare ensued (fear, anger, denial, etc.). I had bouts of extreme paranoia with any new spot on my body for the first few years after diagnosis. I have biopsy scars everywhere! I finally got sick of all the diatribe my onc was throwing at me and I ceased going. I did find another onc about 5 years after initial diagnosis; I went to her once. She was quite compentent, I simply did not want to know anymore. I had already survived much longer than anyone thought I would. The mental anguish with this, or any other fatal disease, is just too much. I would rather live my life LIVING! Yes, I do have occassional bouts of paranoia when I think I have a new spot. I take pictures, document, etc. None of them have turned out to be anything. I wish I could forget this ever happened. I feel like I live in the twilight zone sometimes. Sadly, the few people I met during this part of my life who were going through the same thing have all succomned to the disease. I rarely tell new people in my life about this anymore. It just seems like it was a different lifetime, it happened to a different person. The reason I came here today was because a friend just got diagnosed and she is having a really hard time with her diagnosis. My heart goes out to all who have been affected by this and all other cancers. I wish you all love.

                                                                                                                        Mango
                                                                                                                        Participant

                                                                                                                          I was diagnosed with stage iv in August of 2001. During surgery, they woke me up to tell me they wanted to remove my arm. I would not let them. The usual nightmare ensued (fear, anger, denial, etc.). I had bouts of extreme paranoia with any new spot on my body for the first few years after diagnosis. I have biopsy scars everywhere! I finally got sick of all the diatribe my onc was throwing at me and I ceased going. I did find another onc about 5 years after initial diagnosis; I went to her once. She was quite compentent, I simply did not want to know anymore. I had already survived much longer than anyone thought I would. The mental anguish with this, or any other fatal disease, is just too much. I would rather live my life LIVING! Yes, I do have occassional bouts of paranoia when I think I have a new spot. I take pictures, document, etc. None of them have turned out to be anything. I wish I could forget this ever happened. I feel like I live in the twilight zone sometimes. Sadly, the few people I met during this part of my life who were going through the same thing have all succomned to the disease. I rarely tell new people in my life about this anymore. It just seems like it was a different lifetime, it happened to a different person. The reason I came here today was because a friend just got diagnosed and she is having a really hard time with her diagnosis. My heart goes out to all who have been affected by this and all other cancers. I wish you all love.

                                                                                                                          Bubbles
                                                                                                                          Participant

                                                                                                                            More than 11 years with melanoma!!! Dx'd in 2003.  WLE with lymphadenectomy and positive node.  2007 another lesion. WLE with lymphadenectomy and negative nodes. 2010 mets to brain and lung…surg to lung/SRS to brain.  2 1/2 year nivo trial.  Still NED today….now 4 years Stage IV and NED!  And yes!!!! Immunotherapies work in the brain!!!!  We have known this for some time!  Check it out:

                                                                                                                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

                                                                                                                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                                                                                                                            Wishing you all my best!!! c

                                                                                                                            Bubbles
                                                                                                                            Participant

                                                                                                                              More than 11 years with melanoma!!! Dx'd in 2003.  WLE with lymphadenectomy and positive node.  2007 another lesion. WLE with lymphadenectomy and negative nodes. 2010 mets to brain and lung…surg to lung/SRS to brain.  2 1/2 year nivo trial.  Still NED today….now 4 years Stage IV and NED!  And yes!!!! Immunotherapies work in the brain!!!!  We have known this for some time!  Check it out:

                                                                                                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

                                                                                                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                                                                                                                              Wishing you all my best!!! c

                                                                                                                              Bubbles
                                                                                                                              Participant

                                                                                                                                More than 11 years with melanoma!!! Dx'd in 2003.  WLE with lymphadenectomy and positive node.  2007 another lesion. WLE with lymphadenectomy and negative nodes. 2010 mets to brain and lung…surg to lung/SRS to brain.  2 1/2 year nivo trial.  Still NED today….now 4 years Stage IV and NED!  And yes!!!! Immunotherapies work in the brain!!!!  We have known this for some time!  Check it out:

                                                                                                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

                                                                                                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                                                                                                                                Wishing you all my best!!! c

                                                                                                                                Jahendry12
                                                                                                                                Participant

                                                                                                                                  My husband was diagnosed stage III in april 2011. Feb 2013 CT found 1 lung met which made him stage IV. Had it removed and he has bee NED since.  Keep the stage IV positive stories coming!

                                                                                                                                  Jahendry12
                                                                                                                                  Participant

                                                                                                                                    My husband was diagnosed stage III in april 2011. Feb 2013 CT found 1 lung met which made him stage IV. Had it removed and he has bee NED since.  Keep the stage IV positive stories coming!

                                                                                                                                    Jahendry12
                                                                                                                                    Participant

                                                                                                                                      My husband was diagnosed stage III in april 2011. Feb 2013 CT found 1 lung met which made him stage IV. Had it removed and he has bee NED since.  Keep the stage IV positive stories coming!

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

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