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Ipi/Nivi 2 doses then stopped due to Grade 4 AEs
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Ipi/Nivi 2 doses then stopped due to Grade 4 AEs

› Forums › General Melanoma Community › Ipi/Nivi 2 doses then stopped due to Grade 4 AEs

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    • September 5, 2019 at 6:20 pm
    GerryG
    Participant
      October 2017 two consecutive doses of Combi, stopped due elevated Liver enzymes . Treated with high dose steroids followed by another 2 immunosuppressive drugs, course lasted approximately 6 months. To date no other treatment.
      Scan today showed NED, which highlights you don’t always need lots of doses of these drugs, also immunosuppressants for AEs don’t prevent drug efficiency.
      My primary was removed in 2001, became stage 4 2017, Mets to lung Liver and neck Lymph-node.

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        • September 6, 2019 at 1:17 am
        Bubbles
        Participant
          Sorry for your difficulties on ipi/nivo, Gerry!!! But what a wonderful outcome!!! Thanks so much for sharing! You are living proof of all the data research has been telling us!!!

          First – lots of folks are unable to complete all the recommended doses of ipi/nivo due to side effects – BUT – efficacy is about the same for them as it is for folks who DO complete the series. Here’s the research: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html

          Second – while none of want to take prednisone or other immune suppressing drugs if we don’t have to – treating side effects caused by immunotherapy saves lives, allows some folks to continue therapy, and has been found NOT to suppress a response to that therapy!!! A lot of that data is included in this report: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/02/for-jubesand-rest-of-us-anti-rheumatic.html

          However, all the reports in the world do not hold a candle to the real life experience you have shared! Congrats!! I wish you my best. Celeste

            • September 6, 2019 at 7:25 pm
            GerryG
            Participant
              Celeste thank you so much for your response,. I have followed your blog since my diagnosis back in September 2017, as we all know positive stories are always welcome.
            • September 6, 2019 at 2:21 am
            lkb
            Participant
              Hooray for NED on your scan. Good news always encourages me–thanks!
                • September 6, 2019 at 7:49 pm
                GerryG
                Participant
                  Thank you so much for your comment. In the early days I would scan the internet for a bit of hope and light in all the bleakness ….My personal opinion is , there is a lot of light, but generally peeps don’t share, not realising the huge difference a small comment of positivity can have on a community looking for hope.. The melanoma journey is not a sprint but a marathon, and difficult doesn’t mean impossible …
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