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Rcv’d last IPI/NIVO
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Rcv’d last IPI/NIVO

› Forums › General Melanoma Community › Rcv’d last IPI/NIVO

  • Post
    • May 15, 2019 at 6:27 pm
    Happygal
    Participant
      Hi there,
      I went on the IPI/NIVO combo in January, was able to get 3 infusions in before my liver enzymes went crazy and they stopped the infusions and put me on Prednisone (Which was amazing!)
      My liver calmed down and I recv’d the last IPI/NIVO on 5/2. I have done pretty well, just really tired, which I have come to expect with having already done 1 year of the Nivo. I am still on low dose (20 ml) Predisone daily, I have noticed that about 2 weeks after the IPI/NIVO I usually feel pretty crappy and I can feel it coming.
      My liver enzymes have jumped back up and I am supposed to go back to bi weekly NIVO next week. A little worried about all the side effects, and if I will be able to continue…

      My last CT scan in APRIL showed no further growth which is wonderful!! Now just trying to get thru the roller coaster ride called treatments and see what my body will do with all of this.

      I do have one question is that I have heard taking the steroids while doing immunotherapy is not necessarily conducive to healing.

      Thank you for this place to be able to get my concerns out. It really is the only place I feel I can put these thoughts out so it isn’t hurting those who are concerned and scaring them more than it scares me!!

      Tyais
      diagnosed April 2017 stage 3c, NED until Dec 2018, Stage 4 metastasized to liver and lungs,

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    • Replies
        • May 16, 2019 at 9:49 pm
        Johnjk04
        Participant
          Happy girl – heck yes this is sweet. Not too long ago you were down in the dumps, I’m glad to see the turnaround in your health. You will be in my prayers for a complete response.
            • May 20, 2019 at 4:05 pm
            Happygal
            Participant
              Thank you,
              Yes definitely a roller coaster ride!!
              Thank you for the prayers
            • May 17, 2019 at 12:01 am
            Bubbles
            Participant
              Congrats on no further growth!!! While no need for steroids would be best….in ever so many ways…there are TONS of melanoma patients who deal with side effects as a result of their treatment for which steroids are necessary…yet STILL have a positive response to that therapy. Here is a report with additional links within: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/do-melanoma-peeps-with-side-effects-to.html

              Hope this helps. I wish you my best. Celeste

              • May 17, 2019 at 6:00 am
              GeoTony
              Participant
                Hi Happygal
                Three out of four Ipi/nivo is par for the course, I struggled to reach three, never got the fourth and I totally agree Prednisone is amazing stuff. I went from fatigued, coughing and full body rash to walking 15 miles and 3hrs sleep virtually overnight, then went onto 2 years, 26 rounds of nivo with barely a side effect. Nivo on its own has a different effect profile, hope your one of the lucky ones who sail through the next stage. I’m still stable, some tumours shrink, some grow, now moving onto cdk4/cdk6 treatment due to a ccdn1 (Her-2) gene defect, starts the first week of June, hopefully that will drive the beast away. I’ve been at stage IV for two and a half years and still going strong.
                Just keep on fighting

                GeoTony

                  • May 19, 2019 at 8:25 pm
                  obtu.bt
                  Participant
                    Hi Geo Tony would you please let me know what is? cdk4/cdk6 treatment due to a ccdn1 (Her-2) gene defect?
                    • May 20, 2019 at 4:03 pm
                    Happygal
                    Participant
                      Wow, Awesome and positiveness to you!!! Thank you for the words. I am waiting to see when I start on the NIVO. I had no side effects at all the first round, but then that is also when it went metastatic, so really hoping that the combo jump started everything!
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