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Long time survivors
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Long time survivors

› Forums › Mucosal Melanoma Community › Long time survivors

  • Post
    • December 24, 2018 at 3:22 am
    danny201819
    Participant

      Are there any long term survivors of mucosal melanoma ? Every profile i look at is inactive. Are the folks nto around anymore. sad

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        • December 24, 2018 at 3:51 am
        Becky
        Participant

          My son was dx with oral melanoma ( tongue) in 2009 just before his 21st birthday. It had spread to the  lymph nodes. 2 surgeries, a year of interferon, and NED 9 years!

            • December 24, 2018 at 11:03 pm
            danny201819
            Participant

              Thanks Becky for sharing the hope. Thats what keep me going. I have hunch there are lot more survivors but probably not many on this forum. I am going to start a trial of Keytruda,Ipi and aspirin in two weeks. Surgery is not possible and it would need taking out the bladder and the rectum. I was hoping to see more survival stories. 

              • December 24, 2018 at 11:33 pm
              Becky
              Participant

                Yes mucosal melanoma prettty uncommon ( and oral even more so) and what little info I read at the time was very scary! But things have changed. Like you I loved hearing survival stories….here is hoping you will soon be one of them!

                • December 25, 2018 at 2:42 pm
                Gene_S
                Participant

                  My husband did not have mucosal melanoma but did become stage IV with an unresectable tumor on his cervical spine at C1, C2 area with mets in his liver and lungs as well.  He did Ipi 30 mg/kg and GMCSF and he became NED in July 2012 and has remained NED for over 6 years.  If you would like to read more of his story you can on his profile.

                  Most long term survivors only visit occasionally.  But there is still hope.  We actually watched the tumors that were visible  shrink away.  Prayers that things work out well for you.

                  Judy the loving wife of Gene

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