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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.
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.
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.
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