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Stage 4 only prescribed Nivo
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Stage 4 only prescribed Nivo

› Forums › General Melanoma Community › Stage 4 only prescribed Nivo

  • Post
    • February 18, 2020 at 12:00 pm
    hxcadam
    Participant
      I posted a week or 2 ago about my story and since have been only prescribed Nivo from my doctor. I questioned her and she kept reiterating how toxic Ipi is. But everything i’ve read says Stage 4 SOC is Ipi+Nivo combo. And even if side effects occur and you don’t finish the complete regimen the results are the same. Is this the case? Is my Onc being too cautious because I got Colitis 3 years ago when I was dx Stage 3c and got Ipi by itself. I believe I got it at a much higher dosage as well 10mg/1kg sticks in my mind. Will it be too late to start the combo if my scans in 2 months show no change? I’m BRAF positive with 2 small brain mets, 2 lung and 1 spleen. She seemed to think next step would be Mek inhibitors I believe. I’m just trying to get the best chance possible.

      Thanks,
      Adam.

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    • Replies
        • February 18, 2020 at 5:19 pm
        ed williams
        Participant
          Hi Adam, while melanoma is never 100% do step” X ” followed by step ” Y ” next. The latest research doesn’t support doing nivo by itself when you have brain mets. Two studies, one from Australia called the ABC trial and a second trial called checkmate 204 found response rate for nivo by itself around 20% and durability was an issue, when compared to ipi+ nivo with a response rate of between 55 to 58% with durable response and complete responses. Here are three videos in order from 2017 to June of 2019 with the two trials reported on as they developed over time. Dr. Long from Australia and Dr. Tawbi from MD Anderson are the main oncologist explaining the findings of the two trials over time. You might want to get this information to your oncologist and ask why he would choose nivo by itself when the data really doesn’t support the choice. Also Dr. Weber has talked a few times about giving ipi again after developing side effects if the side effects resolved successfully in the past. https://www.youtube.com/watch?v=X5xGQpdp9OA https://www.youtube.com/watch?time_continue=5&v=0FAZ-NPM_DU&feature=emb_logo https://www.youtube.com/watch?v=gDu3x9xhH-U
            • February 18, 2020 at 5:21 pm
            ed williams
            Participant
              One more link to checkmate 204 article form 2019. https://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.9507
              • February 18, 2020 at 7:05 pm
              hxcadam
              Participant
                Thank you for all of this information Ed. Hoping to see my oncologist tomorrow to discuss this.
                • February 18, 2020 at 11:12 pm
                doragsda
                Participant
                  Are you seeing an oncologist who is a melanoma specialist?
                  • February 19, 2020 at 11:29 am
                  hxcadam
                  Participant
                    It’s one of her specialties. She works for MSK and I believe Dr. Wolchok is part of a team that she brought my case to but when I asked if that was the case I didn’t get a clear response. I may try to see him as well but my insurance will only allow visits in NJ for MSK and I’m not sure if Dr. Wolchok sees patients in NJ.
                  • February 19, 2020 at 3:02 am
                  tkoss
                  Participant
                    I always had questions about my Oncologists knowledge and experience with Melanoma. she was quick to say ‘standard of care’ and then point to NCCM guide. at the time I didn’t know enough to question her. In hindsight I think her visits very perfunctory.

                    I switched doctors.

                    • February 19, 2020 at 9:29 am
                    tkoss
                    Participant
                      One of the other posters was correct. Not all Oncologists are Melanoma specialists or even experienced.. I was with a large 400 Onc Doc practice, and they only show one Melanoma specialist on htier website , in another city and not accessible to me.

                      My Onc never told me what if any experience or knowledge she had with Melanoma. As I said in my first post, her visits with me were perfunctory.

                      I got a second opinion and switched to that Oncologist. He was more detailed in his visit and more thorough and comprehensive in the information about the disease and treatment.

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