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Next step: Clinical Trials
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Next step: Clinical Trials

› Forums › General Melanoma Community › Next step: Clinical Trials

  • Post
    • July 20, 2021 at 12:43 pm
    AMcReader
    Participant
      Hi friends,

      Well, after 10 good months on the triplet (Vem/Cobi + Atezo), it seems like my success is running thin. The good news is that all is not lost, I’m seeing juuuuust barely enough growth in one tumor to warrant a switch to a clinical trial. I could probably fight it out on this current treatment for longer, but I’m anxious to move forward in hopes of finding something that is likely to have a bigger and hopefully more durable response.

      So, the next stop for me is clinical trials. I’ve had some very good conversations with Dr. Davar at the University of Pittsburgh Medical Center. I originally went to him to discuss doing a TIL trial but given the placement of my tumors inside my abdominal peritoneum, the TIL specialist there did not think that direction would work for right now. So, then we started evaluating the immunotherapy trials available to me.

      Currently, I’ve been accepted into HCC 19-081 ipi/nivo with STING agonism. I’m excited about this trial because I saw great success on the Ipi/Nivo combo….but also anxious because Ipi did need up resulting in me developing acute hepatitis the first time. I’m also being considered for HCC 20-101: Nivolumab with axitinib.

      I’m meeting with Dr. Davar tomorrow to talk through my questions on these two trials. So, I’m curious if anyone on this board has heard or participated in earlier versions of these trials and can think of anything specific that I should be considering or asking about.

      As always, I appreciate all of you and your tremendous insight.

      Amanda

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        • July 20, 2021 at 6:22 pm
        ed williams
        Participant
          Dr. Jason Luke at the 22:56 min mark of a recent video talks about Sting pathway and other possible targets to make cold tumors hot. https://www.youtube.com/watch?v=xIft8dxrfjw
            • July 20, 2021 at 10:17 pm
            AMcReader
            Participant
              Thanks for sharing! This is how my doctor described it, but it was nice to see the visuals and hear someone else’s take.
            • July 21, 2021 at 9:29 pm
            gopher38
            Participant
              Hello Amanda,

              Thanks for posting an update.  Hoping this is successful and lasting.  I’m going to get google going and see what I can learn about this (thanks to Ed for the video too).  Would write more, but my last post on rash after opdivo disappeared into the ether.

              Warren

              • July 21, 2021 at 11:03 pm
              sing123
              Participant
                Amanda, have been thinking of you. A proactive attitude is wonderful and I hope that this is the very last treatment to get you durable NED.

                Best to you and your family,

                Cindy

                • July 24, 2021 at 4:13 pm
                Threefitty
                Participant
                  Hi Amanda,

                  I’m sorry I haven’t reviewed your history if the answer is there, but is there some way you know that the Ipi has had a positive effect?

                  I’ve had bad ipi colitis both on second combo dose (which then made me NED) and then on a re-challenge dose of 1/3 after progressing again. And again became stable. Thought for sure Ipi was working, “too bad it kills me”.  Now I’m on optivo maintainence and guess what; apparently I’m not missing the Ipi as scans show my “too many to count” subcutaneous tumors continue to disipate from the “explosion” last December.

                  Possibly a 180 degree reversal in my understanding of effectiveness of single agent Optivo. And correspondingly the necessity of Ipi. I did progress after an adjuvent S3 CT trial with Optivo, but only 18 months after treatment – so….maybe it did work, for a while. I don’t really have an answer. My Ipi vitiligo seems very real (hence it had to be the hero), but at this point, both are in my system and whatever synergies are there may already be available.

                  Side effects in a clinical trial always scared me. You can’t control something and boom, you’re out. And noticing you are weighing a non-Ipi CT vs. an Ipi CT, I wondered about this question in your case.

                  Best of luck with your choice and treatment.

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