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mucosal melanoma

Forums Mucosal Melanoma Community mucosal melanoma

  • Post
    judyk
    Participant

      i was dx with naso/sinus mucosal melanoma 5 years ago i opted for surgery and radiation and more surgery to keep it at bay in my nose. now the PET shows 2 spots in my liver. i feel well but need to have a biopsy and then decide from there. i have been putting off immunotherapy since i dont have any of the markers and it is for skin melanoma. they dont have any specific treatment for mucosal other than use the immunotherpy for skin. recently, i am hearing that there is a 5 year survival rate for 20% of patients. hope that is true.  please let me know if you have mucosal and how you are doing. and what the treatment has been.

      thanks   jk

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    • Replies
        foodie22
        Participant

          Hi Judy, 

          I also have mucosal. If you are on Facebook there is a private page where a lot of us talk about this sort of thing. "Mucosal melanoma warriors" 

          In short, I have no known mutations and still reaponded really well to combination immunotherapy/checkpoint inhibitors. 

          best of luck to you and let me know if you have more questions!

           

          jB 

            KG
            Participant

              Hi Judy,

              I also have mucosal and was recently diagnosed in January.  I had 3 immunotherapy treatments of the combined opdivo and yervoy.  We had to cancel the 4th due to the side effects.  I had my first PET scan in April since treatment started and there was no longer evidence of cancer.  The response to the treatment has been amazing.  I was on prednisone to treat the side effect for about 2 months, just got weaned off and this week started the single treatment of Opdivo.  The plan is to continue Opdivo treatment until the next PET scan and then reevaluate.

              Hope this helps.

              -kg

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