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Anyone on the MDX1106 or Ipi/GMCFS Trials?

Forums General Melanoma Community Anyone on the MDX1106 or Ipi/GMCFS Trials?

  • Post
    Angela C
    Participant

      Hi everyone.

       I have been fighting melanoma since January of 2007 and most recently became Stage IV in November. I did one cycle of IL2 and had scans on Tuesday. I had a mixed response. Some spots stable, a couple shrank, and one spot doubled in size. So, no more IL2 for me.

      Hi everyone.

       I have been fighting melanoma since January of 2007 and most recently became Stage IV in November. I did one cycle of IL2 and had scans on Tuesday. I had a mixed response. Some spots stable, a couple shrank, and one spot doubled in size. So, no more IL2 for me.

      Now I have to find a clinical trial. I have to say that the whole process is frustrating having to do all of the research, make the phone calls, etc. It just seems to me that our doctors should be more involved in this process and helping us to find the right trial. But, I guess so many things are still so early in trials that it is tough for even the doctors to make a strong recommendation. Ugh.

      But, anyway, I am currently looking into either the MDX1106 trial or the Ipi/GMCSF trial. I was originally looking into the Ipi/MDX1106 trial but was told by Sloan Kettering that a hold has been put on that trial.

      MDX1106 is my first choice, but I'm having some difficulty getting into that one. I have a pathology reports from five years ago that says a spot in my lung "favors sarcoidosis." I have never been diagnosed with sarcoidosis, been treated for it, or had issues with these spots. I've even had one of my doctors tell me that I never had it and if I did, "It was the smallest case of sarcoidosis in the world." However, it is listed on my records and sarcoidosis is an exclusion criteria. So, I'm working on getting notes from the doctor that told me I never had it and that MIGHT help to get me into this trial. So frustrating!!

      If that doesn't pan out, then my next choice is the Ipi/GMCSF trial.

      So, are any of you out there on either of these trials? What kind of side effects have you had? Are you showing success with the treatments?

      Thanks for your replies!!

      ~Angela

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    • Replies
        FormerCaregiver
        Participant

          Sorry to read that you became stage IV in November. I don't have any direct
          experiences with the treatments that you mention. However, I do know that
          finding a suitable clinical trial can certainly be a time consuming and
          difficult experience.

          Both Ipi (ipilimumab) and GM-CSF look promising, but they work quite
          differently. The FDA is due to make an announcement regarding Ipi, and
          hopefully it will be approved very soon.

          Frank

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          FormerCaregiver
          Participant

            Sorry to read that you became stage IV in November. I don't have any direct
            experiences with the treatments that you mention. However, I do know that
            finding a suitable clinical trial can certainly be a time consuming and
            difficult experience.

            Both Ipi (ipilimumab) and GM-CSF look promising, but they work quite
            differently. The FDA is due to make an announcement regarding Ipi, and
            hopefully it will be approved very soon.

            Frank

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