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Treatment after stage 3C diagnosis

Forums General Melanoma Community Treatment after stage 3C diagnosis

  • Post
    ggperkins
    Participant

      I had a thin melanoma removed in 2011, stage 1A, clear margins and follow ups with dermatologist. It came back earlier this year in my lymph node in the arm. Had SLND and 1 out of 7 lymph nodes were positive, but the 1 lymph node they are pretty sure were multiple lymph nodes matted together. I also had extracapsular extension. I am totally confused as I have two different Oncologist,  the hospital (a research hospital) where I have gotten my initial treatment and surgery and then my local oncologist for follow up. The hospital options given after surgery are s Clinical Trial, Interferon, or watch and wai, with no radiation. The hospital I went with for surgery did not offer Yervoy, as they feel the risk does not outweigh the results. My local Oncologist, is recommending Yervoy, but they wll only adminiser it at the 10mg dose, and  he is strongly recommending radiation. I traveled back to the hospital for a follow up from the surgery and advised of the local oncologist recommendation of radiation and he responded that it was my decision but in his opinion is not necessary due to it only lessens the chance of local recurrence in that one area and if it did come back there, they could again remove with surgery. He feels the complications with my arm from radiation may outweigh the results.

       I don't understand how every Dr. can have different opinions on treatments..

      Any advice?

    Viewing 11 reply threads
    • Replies
        Polymath
        Participant

          Hello Anon,

          The message here, is there is never one right answer.  Melanoma is a very bad-boy who likes to misbehave.  What's clear is what works for one, may or may not work for another.  It would appear in your case that the most logical, aggressive, and with best chance of success would be the Yervoy, and if possible, add radiation at the same time, as there appears to be increased response with the combo.  Yervoy side-effects vary wildly from person to person so I say go into to it with confidence and don't expect adverse reactions, but watch for them and report them  to Dr. immediately. Some folks here have managed to get the insurance to cover the lower dose 3mg with Dr. support which is an even better idea.  I can't offer much more as my stage 3 experience was so short I did not even have a chance to decide what options were offered, but hopefully you can nip this in the bud now.  Best to you in the battle.

          Gary

           

          Polymath
          Participant

            Hello Anon,

            The message here, is there is never one right answer.  Melanoma is a very bad-boy who likes to misbehave.  What's clear is what works for one, may or may not work for another.  It would appear in your case that the most logical, aggressive, and with best chance of success would be the Yervoy, and if possible, add radiation at the same time, as there appears to be increased response with the combo.  Yervoy side-effects vary wildly from person to person so I say go into to it with confidence and don't expect adverse reactions, but watch for them and report them  to Dr. immediately. Some folks here have managed to get the insurance to cover the lower dose 3mg with Dr. support which is an even better idea.  I can't offer much more as my stage 3 experience was so short I did not even have a chance to decide what options were offered, but hopefully you can nip this in the bud now.  Best to you in the battle.

            Gary

             

            Polymath
            Participant

              Hello Anon,

              The message here, is there is never one right answer.  Melanoma is a very bad-boy who likes to misbehave.  What's clear is what works for one, may or may not work for another.  It would appear in your case that the most logical, aggressive, and with best chance of success would be the Yervoy, and if possible, add radiation at the same time, as there appears to be increased response with the combo.  Yervoy side-effects vary wildly from person to person so I say go into to it with confidence and don't expect adverse reactions, but watch for them and report them  to Dr. immediately. Some folks here have managed to get the insurance to cover the lower dose 3mg with Dr. support which is an even better idea.  I can't offer much more as my stage 3 experience was so short I did not even have a chance to decide what options were offered, but hopefully you can nip this in the bud now.  Best to you in the battle.

              Gary

               

              jvictoria
              Participant

                If I may add… make sure that your hospital and doctors are top notch "Melanoma" specialist. Many reaserch hospitals are not as focused on Melanoma as others. I believe AIM and NCI provide resources for this.

                jvictoria
                Participant

                  If I may add… make sure that your hospital and doctors are top notch "Melanoma" specialist. Many reaserch hospitals are not as focused on Melanoma as others. I believe AIM and NCI provide resources for this.

                  jvictoria
                  Participant

                    If I may add… make sure that your hospital and doctors are top notch "Melanoma" specialist. Many reaserch hospitals are not as focused on Melanoma as others. I believe AIM and NCI provide resources for this.

                    stotes
                    Participant

                      I can tell you me story if that helps but every patient is different and responds differently.  Also, it feels like every MD has a different opinion about recommendations for treatment which has been the hardest part for me to deal with.  I just had to do a lot of research, make an informed decision and not look back.  I was first diagnosed with stage 1A in 2008.  Had a wide excision with clear margins and no other treatment with continuous follow up.  I progressed to Stage lllC in Jan 2016 with three of eleven inguinal nodes positive for melanoma and also extracapsular extension. I had radiation and had three doses of Yervoy at the 3mg dose.  Unfortunately, I just found out that I have progressed to Stage lV and will begin new treatment.  I think it is a travesty that PD-1 inhibitors are not available to Stage lllC patients because that is the treatment that I really wanted to have but was not allowed to have unless I found a clinical trial and there is no guarantee that you would receive the PD-1 inhibitor.  On the bright side, I will now have access to them.  There are plenty of patients that I have read (on this site) that are NED for years (and counting) with a Stage lllC diagnosis.  My story is what it is – just take this serious, do your research and see a melanoma specialist who only works with melanoma patients.  I was lucky enough to find a doc that would give me Yervoy at 3mg and take my wishes into consideration.  There are a lot of smart, helpful people here that will give your even more advise.  Best wishes!  Christal

                      stotes
                      Participant

                        I can tell you me story if that helps but every patient is different and responds differently.  Also, it feels like every MD has a different opinion about recommendations for treatment which has been the hardest part for me to deal with.  I just had to do a lot of research, make an informed decision and not look back.  I was first diagnosed with stage 1A in 2008.  Had a wide excision with clear margins and no other treatment with continuous follow up.  I progressed to Stage lllC in Jan 2016 with three of eleven inguinal nodes positive for melanoma and also extracapsular extension. I had radiation and had three doses of Yervoy at the 3mg dose.  Unfortunately, I just found out that I have progressed to Stage lV and will begin new treatment.  I think it is a travesty that PD-1 inhibitors are not available to Stage lllC patients because that is the treatment that I really wanted to have but was not allowed to have unless I found a clinical trial and there is no guarantee that you would receive the PD-1 inhibitor.  On the bright side, I will now have access to them.  There are plenty of patients that I have read (on this site) that are NED for years (and counting) with a Stage lllC diagnosis.  My story is what it is – just take this serious, do your research and see a melanoma specialist who only works with melanoma patients.  I was lucky enough to find a doc that would give me Yervoy at 3mg and take my wishes into consideration.  There are a lot of smart, helpful people here that will give your even more advise.  Best wishes!  Christal

                        stotes
                        Participant

                          I can tell you me story if that helps but every patient is different and responds differently.  Also, it feels like every MD has a different opinion about recommendations for treatment which has been the hardest part for me to deal with.  I just had to do a lot of research, make an informed decision and not look back.  I was first diagnosed with stage 1A in 2008.  Had a wide excision with clear margins and no other treatment with continuous follow up.  I progressed to Stage lllC in Jan 2016 with three of eleven inguinal nodes positive for melanoma and also extracapsular extension. I had radiation and had three doses of Yervoy at the 3mg dose.  Unfortunately, I just found out that I have progressed to Stage lV and will begin new treatment.  I think it is a travesty that PD-1 inhibitors are not available to Stage lllC patients because that is the treatment that I really wanted to have but was not allowed to have unless I found a clinical trial and there is no guarantee that you would receive the PD-1 inhibitor.  On the bright side, I will now have access to them.  There are plenty of patients that I have read (on this site) that are NED for years (and counting) with a Stage lllC diagnosis.  My story is what it is – just take this serious, do your research and see a melanoma specialist who only works with melanoma patients.  I was lucky enough to find a doc that would give me Yervoy at 3mg and take my wishes into consideration.  There are a lot of smart, helpful people here that will give your even more advise.  Best wishes!  Christal

                          Stlmag
                          Participant

                            Husband diagnosed 10/13/15 – Stage 3 C advanced with 4 of 5 axillary lymph nodes; BRAF; high Mitotic rate 1 multiple local recurrances & multiple surgeries & skin graft.  Yervoy x 1 dose with terrible reaction. No more meds. Now another pos lymph node in sub-pectoral lymph node. It is nonstop…as soon as one surgical site is almost healed- here comes another blow.

                            Stlmag
                            Participant

                              Husband diagnosed 10/13/15 – Stage 3 C advanced with 4 of 5 axillary lymph nodes; BRAF; high Mitotic rate 1 multiple local recurrances & multiple surgeries & skin graft.  Yervoy x 1 dose with terrible reaction. No more meds. Now another pos lymph node in sub-pectoral lymph node. It is nonstop…as soon as one surgical site is almost healed- here comes another blow.

                              Stlmag
                              Participant

                                Husband diagnosed 10/13/15 – Stage 3 C advanced with 4 of 5 axillary lymph nodes; BRAF; high Mitotic rate 1 multiple local recurrances & multiple surgeries & skin graft.  Yervoy x 1 dose with terrible reaction. No more meds. Now another pos lymph node in sub-pectoral lymph node. It is nonstop…as soon as one surgical site is almost healed- here comes another blow.

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