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Beyond the Year
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Beyond the Year

› Forums › General Melanoma Community › Beyond the Year

  • Post
    • July 30, 2017 at 7:31 pm
    oocn
    Participant

      General question here for the MPIP community. After completeing a year long clinical trial on adjuvant pd1 therapy, or event ipi has any one here been able to enroll in a secondary trial?

      I know it sounds like overkill if you are disease free, but is this reasonable?

      So far I've received 12 doses of pembro and am currently disease free (knocks on wood) for resected stage 3b disease. 

      Is it to premature to be thinking of a second year? Has anyone been down this road and asked their oncologist, or would it be worth asking mine to see if I could qualify for a second year of pembro

      off trial?

      I am tremendously grateful to be in the position I am, but am the sort of person who likes to always be a step ahead. 

      Best to you all, any responses would be greatly appreciated. 

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    • Replies
        • July 30, 2017 at 8:20 pm
        CindyJ
        Participant

          My mother is in a target trial. I asked the woman in charge if at the end of the trial she is still responding positively, do they just take it away? She told me no, that my mom could continue with the treatment as long as it's working, off trial. Of course I'm not sure this is the case overall, but wanted to share. Best Wishes for continued NED!

          • August 1, 2017 at 1:53 pm
          cancersnewnormal
          Participant

            Coming off of an effective drug is a bit scary. However… much of the chatter regarding "when to stop" has been circulating around 6 months beyond NED or stability. The reasoning for this is to minimize the possibility of late onset IRAE's due to cummulative build up. I went 17 months on Keytruda with precious little in the way of side effects. By 18 months, I was beginning to have muscle soreness. By 19 months there was some mild joint pain. At 20 months, the mild pancreatitis kicked in and the inflammatory arthritis was in full swing. Since I had been NED for quite some time, my docs and I opted to "take a break" from Keytruda infusions. That was July 5, 2016…. I'm still on that "break"… and still NED (with the exception of the two wee bits of scar tissue from gamma radiated brain lesions). : )  i am still on the arthritis meds a year later. Don't think of it as the "end" of your treatments… think of it as a "break". : )  Pembro will be there for you should you need it again.  

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