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Newly Stage IV

Forums Cutaneous Melanoma Community Newly Stage IV

  • Post
    Joe.Pro
    Participant

      My history:

      Diagnosed with Acral Lentigous Melanoma April 2nd 2015 on bottom of my foot.  PET scan confirmed groin nodes were involved.  Surgery April 30th, removed tumor from foot and CLND right groin.  13 nodes were positive but the "deeper" nodes were free of cancer.  

      Last week I went to have the skin graft surgery performed on my foot and upon closer examination by the plastic surgeon he biopsied a few spots that looked suspicious.  One of the spots came back positive which prompted a PET scan and brain MRI.  Results today revealed a tumor the size of a small grape and some disease in the lining of my lung as well.

      I am receiving treatment at Dana Farber in Boston so I am seeing Melanoma specialists.

      My original tumor did not reveal any of the BRAF mutations so I am BRAF wild type.

      I am 34, wife and 4 young children – I have a lot of life in me and will do anything to watch them grow up.  That being said, I am curious to what you wonderful folks think I should attempt first for treatment.

      My oncologist thinks the IPI/NIVO combo is my best bet to start and judging by the response rates I don't necessarily disagree with her but I am also intrigued by TIL.  

      I would love all of your input and thoughts as I know many of you on this forum have a wealth of knowledge and expertise dealing with this horrific disease.

      Thanks so much for your time and thoughts!

      Joe

    Viewing 8 reply threads
    • Replies
        tschmith
        Participant

          Well….I think I would go with your oncologist's plan of ipi/nivo. I participated in a gene therapy treatment at NIH called MAGE TCR.  I wasn't a responder. (It's similar in protocol to TIL…doable but not the easiest.  You could do TIL later if you qualify.)  I then started Keytruda and was an immediate responder.  My doctor felt the combination of the T Cells and Keytruda was why I responded so quickly.

          Maybe a second opinion would help you decide.   

          Best Wishes!

          Terrie

          tschmith
          Participant

            Well….I think I would go with your oncologist's plan of ipi/nivo. I participated in a gene therapy treatment at NIH called MAGE TCR.  I wasn't a responder. (It's similar in protocol to TIL…doable but not the easiest.  You could do TIL later if you qualify.)  I then started Keytruda and was an immediate responder.  My doctor felt the combination of the T Cells and Keytruda was why I responded so quickly.

            Maybe a second opinion would help you decide.   

            Best Wishes!

            Terrie

            tschmith
            Participant

              Well….I think I would go with your oncologist's plan of ipi/nivo. I participated in a gene therapy treatment at NIH called MAGE TCR.  I wasn't a responder. (It's similar in protocol to TIL…doable but not the easiest.  You could do TIL later if you qualify.)  I then started Keytruda and was an immediate responder.  My doctor felt the combination of the T Cells and Keytruda was why I responded so quickly.

              Maybe a second opinion would help you decide.   

              Best Wishes!

              Terrie

              paz58
              Participant

                I had great results from ipi, but did not take nivo – I took and am still taking dabrafenib and tremetinib, but my melanoma was BRAF positive.  The problem with getting a second opinion is that it may be completely different than the first opinion, then what?  Who is right?  I am a bit jaded from dealing with so many doctors telling me different things;  I underwent radiation at one hospital then was told at the current hospital where I am treating that they never do radiation for melanoma. And it didn't work, the melanoma metastasized.  I am currently in complete remission from stage IV, so it can be done.  I would recommend you follow the doctor's recommendation as you can always try something different later if you don't respond.  Good luck to you.

                paz58
                Participant

                  I had great results from ipi, but did not take nivo – I took and am still taking dabrafenib and tremetinib, but my melanoma was BRAF positive.  The problem with getting a second opinion is that it may be completely different than the first opinion, then what?  Who is right?  I am a bit jaded from dealing with so many doctors telling me different things;  I underwent radiation at one hospital then was told at the current hospital where I am treating that they never do radiation for melanoma. And it didn't work, the melanoma metastasized.  I am currently in complete remission from stage IV, so it can be done.  I would recommend you follow the doctor's recommendation as you can always try something different later if you don't respond.  Good luck to you.

                  paz58
                  Participant

                    I had great results from ipi, but did not take nivo – I took and am still taking dabrafenib and tremetinib, but my melanoma was BRAF positive.  The problem with getting a second opinion is that it may be completely different than the first opinion, then what?  Who is right?  I am a bit jaded from dealing with so many doctors telling me different things;  I underwent radiation at one hospital then was told at the current hospital where I am treating that they never do radiation for melanoma. And it didn't work, the melanoma metastasized.  I am currently in complete remission from stage IV, so it can be done.  I would recommend you follow the doctor's recommendation as you can always try something different later if you don't respond.  Good luck to you.

                    LaurenE
                    Participant

                      I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it. 

                      TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working. 

                      You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!

                      LaurenE
                      Participant

                        I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it. 

                        TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working. 

                        You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!

                        LaurenE
                        Participant

                          I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it. 

                          TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working. 

                          You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!

                      Viewing 8 reply threads
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