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Mucosal Melanoma survivors ? ?
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Mucosal Melanoma survivors ? ?

› Forums › Mucosal Melanoma Community › Mucosal Melanoma survivors ? ?

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    • October 22, 2019 at 8:08 pm
    sks2019
    Participant
      Anyone here know or is a Mucosal melanoma survivor ? I am wondering have the stats really changed for mucosal melanoma patients as well ? or they are still the same ? My mom was diagnosed with vaginal mucosal melanoma oct 2018 and is now on her second dose of ipi/nivo with only fatigue and headache as a side effect , nothing major as compared to other folks here who had success. So I am afraid if the combo is working for her. Good luck to all of us fighting this day in day out.
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        • October 22, 2019 at 9:08 pm
        Bubbles
        Participant
          The search bubble on my blog is your friend. Here are lots of studies: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=mucosal+melanoma

          Mucosal melanoma is a tougher row to hoe than cutaneous, and unfortunately, melanoma peeps with ocular, mucosal, or cns disease were often denied access to trials in the recent past. However, that is gradually changing and the ipi/nivo combo DOES provide responses. You have reason for hope.

          There are mucosal patients on this forum, however they are less common than cutaneous peeps as would be expected given the numbers over all.

          Hope that helps. celeste

            • October 23, 2019 at 5:05 pm
            sks2019
            Participant
              Thanks Bubbles for always spreading hope ! I guess there arent many folks around that have experience with Mucosal. 🙁
              • October 24, 2019 at 5:04 am
              MelMel
              Participant
                Don’t look at it that way because there are many, like myself who never found their primary. Basically, at this point it makes little difference where the primary existed since treatment plan is the same for stage IV melanoma of either the skin or mucosal type. Apparently, mucosal melanoma patients are missing the BRAF mutation.
                Melanie
              • October 31, 2019 at 10:02 pm
              Becky
              Participant
                My son was diagnosed with mucosal ( oral, tongue) melanoma stage 3 just before his 21 st birthday in 2009…he is now 31 and NED for almost 10 years
                  • November 4, 2019 at 6:23 pm
                  sks2019
                  Participant
                    Thanks Becky , Hope he continues to do well .
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