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Question regarding Predisone/Immunosuppresion while on combo

Forums General Melanoma Community Question regarding Predisone/Immunosuppresion while on combo

  • Post
    nasullivan
    Participant
      Hello,

      So my grandmother is stage 4 (as many of you may know). She received 2 ipi/nivo combination treatments and all tumors shrunk. After the second infusion, she began with colitis – on September 9th. She has been on predisone since (60mg-10mg) but every time they try to taper her – she has a flare up. So, for now she is on 40mg and stable.

      She received two infusions of remicade – to no avail. They have now switched her to Antivo (and she will get her second treatment tomorrow). We are hoping it will work so we can get her off the steroids SOON!

      The doctor at MSK says she may not need more ipi/nivo and “maybe she got enough.”

      However, I thought protocol was to continue with the nivo for 2 years?

      Any insight into steroids and effect on cancer or ongoing immunotherapy?

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    • Replies
        ed williams
        Participant
          Read results and discussion section of checkmate 067 trial,where no difference in survival based on how long or if you complete all 4 induction treatments of combination. https://www.nejm.org/doi/10.1056/NEJMoa1709684
          Hukill
          Participant
            I think 2 years is normal but you will find stories on here where some only received 2 combos before their immune system wrecked havoc on other parts of their bodies and those 2 combos were enough to do the job. I am not a dr but if her immune system is still causing problems elsewhere I would think it would still be attacking the melanoma also. I stayed on nivo a year after I was NED for a total of 26 months and 5 combo and 52 nivo. I did have 7 different side effects but none severe enough to stop treatment or get steroids.
            MelMel
            Participant
              Same scenario except I ended up with hepatitis. Stopped immunotherapy for 5 months while I was on prednisone and a tissue rejection drug for almost 4 months. The key when dealing with severe therapy side effects is to find out which specific drug (steroid plus tissue rejection drug, etc.) and exact doseage that each person requires for their specific case. When one deals with the side effects from immunothetapy, this becomes quite challenging and time consuming. Steroids are wonderful but are intended for short term (week or two) use. Once you use them for weeks or months, this brings other umwanted side effects.
              From my own experience, I wanted to get back to combo ASAP however that was not to be. My life was dictated by AST and ALT numbers for months. I wanted to go on nivo only but even that was only a possible option after I was completely weaned off steroids and my liver enzymes were stable for at least 3-4 weeks. This to me felt like eternity. Even off immunotherapy, I continued to have great results in regards to tumor size. Eventually, this stabilized and I was sure tumors would start to regrow or metastize to other locations. So far, I have received six months of nivo (biweekly) and tumors have slightly shrunk, some which on the previous CT scan remained the same are now, on the most recent CT scan just a week ago shrinking. I wondered why? Are they mutating or are they scar tissue? My oncologist believes that as long as the tumors are shrinking, that means there are active tumor cells present. Sometimes a scar tissue forms but then there would be no shrinkage. Basically, as long as there is continued shrinkage and manageable side effects, one continues with nivo when they are ready. One thing to note is that melanoma is rapid and as such it also disappears rapidly and completely. My own dilemma is that if I had 50% shrinkage followed by 30% all within two months of the combo therapy why are we now treading on 10-15% shrinkage and it’s selective and taking 6 or more months? Beggars cannot be choosers so I am grateful but I remain curious.
              Hope the colitis is under control and your grandmother resumes the nivo. Once she is ready to restart immunotherapy, perhaps ask if she should get biweekly nivo infusions instead of every 4 weeks. This way, if she develops colitis maybe it will not be as severe and they will know which steroids and how much is effective/works for her.
              Best of luck.
              Melanie
              sks2019
              Participant
                I had the same question today. my mom had her 3 infusions of ipi/nivo with her third infusion landing her in ER 3 times. She is on prednisone 40 mg/day and feeling better, her fourth infusion which was due today just got cancelled as they want to wean her off the prednisone before the fourth one. so wait for 2 weeks to wean and start again.
                The thing i am concerned about now is that nurse mentioned that Prednisone reverses the effect of immunotherapy. She has gone through so much and if we reversed the effect of ipi/nivo with prednisone is disappointing.
                sks2019
                Participant
                  I had the same question today. my mom had her 3 infusions of ipi/nivo with her third infusion landing her in ER 3 times. She is on prednisone 40 mg/day and feeling better, her fourth infusion which was due today just got cancelled as they want to wean her off the prednisone before the fourth one. so wait for 2 weeks to wean and start again.
                  The thing i am concerned about now is that nurse mentioned that Prednisone reverses the effect of immunotherapy. She has gone through so much and if we reversed the effect of ipi/nivo with prednisone is disappointing.
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