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    • October 31, 2015 at 1:28 pm
    chrisholder
    Participant

      Hello, All,

      I am Chris, a 68 year old married male musician living in western upstate NY & brand new to this site.  Diagnosed with mucosal melanoma in the maxillary sinus six months ago in May and quickly joined an expanded access c. trial at Dana Farber in Boston with the Ipi/Nivo dual infusion therapy.  Severe side effects (esp. thyroiditis and hepatitis) forced me out after only two infusions requiring me to spend the rest of the summer recovering from the s. effects.  Began a new course of Pembrolizumab (Keytruda) in Sept and hope this will show some positive results eventually.  Would be interested to hear stories from other m. melanoma patients about their treatments, progress and outlook.  Thanks in advance for welcoming me in here!   

    Viewing 5 reply threads
    • Replies
        • November 1, 2015 at 1:50 pm
        Gene_S
        Participant

          Welcome to the group but sorry to hear you had to join here Chris.

          I just wanted to tell you sometimes on the weekends things are a bit slow so don't be saddened by the slow response as it is usually a responding group.

          My husband does not have mucosal melanoma but if you would like to read about him you can check out his profile.  He was diagnosed in January of 2008, became Stage IV in 2010, started a clinical trial in Mar. 2011 and became NED (no evidence of disease) in Oct. of 2012 up to this date.  So he has been NED for 3 years.

          Judy (loving wife of Gene Stage IV and now NED)

          • November 1, 2015 at 1:50 pm
          Gene_S
          Participant

            Welcome to the group but sorry to hear you had to join here Chris.

            I just wanted to tell you sometimes on the weekends things are a bit slow so don't be saddened by the slow response as it is usually a responding group.

            My husband does not have mucosal melanoma but if you would like to read about him you can check out his profile.  He was diagnosed in January of 2008, became Stage IV in 2010, started a clinical trial in Mar. 2011 and became NED (no evidence of disease) in Oct. of 2012 up to this date.  So he has been NED for 3 years.

            Judy (loving wife of Gene Stage IV and now NED)

            • November 1, 2015 at 1:50 pm
            Gene_S
            Participant

              Welcome to the group but sorry to hear you had to join here Chris.

              I just wanted to tell you sometimes on the weekends things are a bit slow so don't be saddened by the slow response as it is usually a responding group.

              My husband does not have mucosal melanoma but if you would like to read about him you can check out his profile.  He was diagnosed in January of 2008, became Stage IV in 2010, started a clinical trial in Mar. 2011 and became NED (no evidence of disease) in Oct. of 2012 up to this date.  So he has been NED for 3 years.

              Judy (loving wife of Gene Stage IV and now NED)

              • November 2, 2015 at 4:11 am
              kylez
              Participant

                Hi Chris,

                Wow, those are some powerful side effects that you're been put through and came through. I hope the Pembro acts less extreme.

                I've been able to dodge high grade immunotherapy side effects so far. Mostly I got joint pain, maybe something like arthralgia, for awhile on my current treatment (Opdivo+Lirilumab). Previously I got high-dose IL2 treatment in 2010, and Yervoy in 2011.

                Hope it goes well, and good luck and welcome.

                – Kyle 

                 

                • November 2, 2015 at 4:11 am
                kylez
                Participant

                  Hi Chris,

                  Wow, those are some powerful side effects that you're been put through and came through. I hope the Pembro acts less extreme.

                  I've been able to dodge high grade immunotherapy side effects so far. Mostly I got joint pain, maybe something like arthralgia, for awhile on my current treatment (Opdivo+Lirilumab). Previously I got high-dose IL2 treatment in 2010, and Yervoy in 2011.

                  Hope it goes well, and good luck and welcome.

                  – Kyle 

                   

                  • November 2, 2015 at 4:11 am
                  kylez
                  Participant

                    Hi Chris,

                    Wow, those are some powerful side effects that you're been put through and came through. I hope the Pembro acts less extreme.

                    I've been able to dodge high grade immunotherapy side effects so far. Mostly I got joint pain, maybe something like arthralgia, for awhile on my current treatment (Opdivo+Lirilumab). Previously I got high-dose IL2 treatment in 2010, and Yervoy in 2011.

                    Hope it goes well, and good luck and welcome.

                    – Kyle 

                     

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