Flunking out of IpiNivo
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Flunking out of IpiNivo

› Forums › General Melanoma Community › Flunking out of IpiNivo

  • Post
    • May 20, 2019 at 11:27 am
    EricaInMS
    Participant
      Has anyone gone to a reduced dose/longer time between infusions of Nivo due to side effects? We’ve already dropped the Ipi after 2 infusions due to liver damage, and it’s looking like the David’s liver numbers are creeping up on just the Nivo. So far his response rate has been excellent, with one tumor gone and the other down to half the diameter.
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        • May 21, 2019 at 3:04 am
        Carlsbad317
        Participant
          After my dad’s second treatment the doctor at Huntsman Cancer Institute said he needed to drop Ipi due to “severe toxicity.” His 3rd treatment was Nivo only with somewhat less side effects, but he was still experiencing the ones from the second treatment. The Vegas doctors are way more aggressive in their own words and want to continue the Ipi/ Nivo. They advised against cutting down even though he had lost close to 20 pounds, in ER for potassium, fluids and antibiotics due to colon infection all within the 2 weeks after combo treatment.
          He is really at a loss on what to do as there are different opinions- Petscan was today so we will see what the June treatments hold.
          The process is insane to me- praying for you and your husband.
            • May 21, 2019 at 3:07 pm
            EricaInMS
            Participant
              My understanding is that they can prescribe a round of steroids when the side effects get too severe and then resume the immunotherapy. That does not impact the effectiveness of the treatment. Also, more adverse reactions too the treatment usually correlated with higher response rates. It’s a hard balance, side effects versus disease progression.

              Our issue is that it is impacting my husband’s liver, and that is usually grounds for discontinuing the therapy.

              I hope you hear good news from your father’s Petscan. David’s response rate was excellent after two IpiNivo infusions, followed by 6 weeks of steroids.

              • May 22, 2019 at 1:34 am
              Mark_DC
              Participant
                Dear Erica, I think what you write is correct, that side effects may show something is working, but that the usual strategy is to pause and wait for the liver numbers to get better, if not then use steroids to get the numbers down and then start again. My doctors played by the book on this, i “failed” after one does and keytruda after three months as my liver numbers almost reached 200.
                On the plus side, after a three month pause the problem never recurred, so you maybe lucky.
                In the end for me intralesional seems to have worked; am not sure its an option for you
                Good luck Mark
                • May 22, 2019 at 1:35 am
                Mark_DC
                Participant
                  PS please dont see this as “flunking” or “failing” we need better words
                • May 22, 2019 at 2:11 am
                MelanomaMike
                Participant
                  Hi Erica, thank you for taking care of your husband, without my own wife Hillary, i wouldnt be alive today i tell ya that much…
                  I to did the ipi,nivo had a few postpones on infusions, that Ipi blew my adrenal/pututiary glands all to hell and i nolonger produce Cortisol on my own..now i take Hydrocortisone and sll is good, i made it thru all 4 doses of ipi but 6 days after my first bag of the wicked stuff, i experienced HELL as i new it for 10 days, didnt eat, pounding head, vomiting left and right weak as heck it was an experiance ill NEVER forget….Maybe after his liver numbers get leveled he can continue the Ipi? It shrunk a few of my tumors in my lungs so, its BRUTAL but its a decent drug (as well as the opdivo) anyways, prayers are with you and good vibes your way..
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