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Mucosal Melanoma

› Forums › Cutaneous Melanoma Community › Mucosal Melanoma

  • Post
    • April 21, 2015 at 11:53 am
    RGal
    Participant

      Does mucosal melanoma respond to immunotherapy treatments differently from cutaneous?  My father has a ery high tumor burden and was just taken off one of the pd-1 trials after only 2 mts since his scan showed many new nodules and no improvement.   His oncologist is now recommending yervoy.  Have any of you had experience with a similar situation?  

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    • Replies
        • April 21, 2015 at 10:22 pm
        Ninniditti
        Participant

          Hi! I got my diagnose, mucosal melanoma, 6.5 years ago  (I was 60 then) . 4 years I managed with just surgury(6),  but 1.5 years ago a new MMM was unresectable. I  then tried nivo in a trial, scan showed a tiny growth so I had to quit the trial. Then I tried ipi but after only one infusion I had severe immune-related adverse events . That was last summer and I was in hospital for 2 weeks and was given 160 mg infusion of predsinol and that fixed the inflammation in liver. I aIso had inflammation in colon and thyrodea. I am still on 5 mg. My oncologist thought that nivo started the inflammation and ipi made it much worse. I had to stop ipi and am not allowed to have any kind of immuno-therapy in the future. Now I am on dacarbazine every third week and have been stable since I started . The first week after the infusion I am quite ill (mainly fatigue), but the following two weeks I feel better than I have done for years. My oncologist believe dacarbazine has better effect on mucosal than cutanous melanoma. I have a new scan last week. I wish your father all luck!

           
            
           
            • June 10, 2015 at 2:54 pm
            EricaLoney78
            Participant

              Wow!!!! 6.5 years!!!!! That makes me so hopeful! The drs won't remove my moms tumor though and it has metastasized to her jawbone 🙁

              we are in Philadelphia at fox Chase

              • June 10, 2015 at 2:54 pm
              EricaLoney78
              Participant

                Wow!!!! 6.5 years!!!!! That makes me so hopeful! The drs won't remove my moms tumor though and it has metastasized to her jawbone 🙁

                we are in Philadelphia at fox Chase

                • June 10, 2015 at 2:54 pm
                EricaLoney78
                Participant

                  Wow!!!! 6.5 years!!!!! That makes me so hopeful! The drs won't remove my moms tumor though and it has metastasized to her jawbone 🙁

                  we are in Philadelphia at fox Chase

                • April 21, 2015 at 10:22 pm
                Ninniditti
                Participant

                  Hi! I got my diagnose, mucosal melanoma, 6.5 years ago  (I was 60 then) . 4 years I managed with just surgury(6),  but 1.5 years ago a new MMM was unresectable. I  then tried nivo in a trial, scan showed a tiny growth so I had to quit the trial. Then I tried ipi but after only one infusion I had severe immune-related adverse events . That was last summer and I was in hospital for 2 weeks and was given 160 mg infusion of predsinol and that fixed the inflammation in liver. I aIso had inflammation in colon and thyrodea. I am still on 5 mg. My oncologist thought that nivo started the inflammation and ipi made it much worse. I had to stop ipi and am not allowed to have any kind of immuno-therapy in the future. Now I am on dacarbazine every third week and have been stable since I started . The first week after the infusion I am quite ill (mainly fatigue), but the following two weeks I feel better than I have done for years. My oncologist believe dacarbazine has better effect on mucosal than cutanous melanoma. I have a new scan last week. I wish your father all luck!

                   
                    
                   
                  • April 21, 2015 at 10:22 pm
                  Ninniditti
                  Participant

                    Hi! I got my diagnose, mucosal melanoma, 6.5 years ago  (I was 60 then) . 4 years I managed with just surgury(6),  but 1.5 years ago a new MMM was unresectable. I  then tried nivo in a trial, scan showed a tiny growth so I had to quit the trial. Then I tried ipi but after only one infusion I had severe immune-related adverse events . That was last summer and I was in hospital for 2 weeks and was given 160 mg infusion of predsinol and that fixed the inflammation in liver. I aIso had inflammation in colon and thyrodea. I am still on 5 mg. My oncologist thought that nivo started the inflammation and ipi made it much worse. I had to stop ipi and am not allowed to have any kind of immuno-therapy in the future. Now I am on dacarbazine every third week and have been stable since I started . The first week after the infusion I am quite ill (mainly fatigue), but the following two weeks I feel better than I have done for years. My oncologist believe dacarbazine has better effect on mucosal than cutanous melanoma. I have a new scan last week. I wish your father all luck!

                     
                      
                     
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