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How long can one feasibly wait before restarting ipi/nivo?
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How long can one feasibly wait before restarting ipi/nivo?

› Forums › General Melanoma Community › How long can one feasibly wait before restarting ipi/nivo?

  • Post
    • February 6, 2021 at 9:05 am
    MelWave
    Participant
      My partner’s third infusion of ipi/nivo is currently on hold because he developed grade 3 hypophysitis. It has been treated with steroids and we are not sure how soon he will be able to taper those down – we haven’t had success so far with that, although it has only been two weeks.

      The good news are that his scans showed response so far, although some inflammation/residual tumor (cannot really say at this stage) is still visible.

      We are discussing continuing combo vs passing on to nivo alone with his doctors and I was wondering in principle how long have people waited before resuming ipi/nivo if we go this route? Does someone have experience of waiting say two months or more between doses due to side effects?

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    • Replies
        • February 6, 2021 at 3:06 pm
        JudiAU
        Participant
          Two rounds of combo, spiked super high fever with week long hospitalization.     Started a lower dose steroid 2o mg. Surgery for brain met. Restarted combo on two weeks. Radiation while on combo and lowish steroid. Finished four combos. Switched to single agent. Still on steroid, have reduced dosage twice now 5 mg.  Hoping they will let me reduce dosage again at my next appointment.

          my doctor did not want me waiting around  and wanted the drugs wanted the radiation wanted it all. My neurosurgeon did not like placement of met (previously operated twice for unrelated brain tumor) so it was removed surgically. My last three scans have been clean

           

          • February 6, 2021 at 7:12 pm
          Edwin
          Participant
            My second ipi/nivo infusion was 9 weeks after my first. Shortly after my first ipi/nivo treatment I had very bad diarrhea and lost too much weight. I was given steroids and two infusions of nivo only between my 1st and 2nd ipi/nivo infusions. I received all 4 ipi/nivo infusions.
            • February 7, 2021 at 2:03 pm
            MelWave
            Participant
              Thanks, Edwin and Judy!

              The oncologist in our case doesn’t want to give ipi/nivo before the steroid dosage is under 10mg (seems reasonable to me). So we might have to wait close to the time you waited, Edwin. Good to know it is something that is done.

               

               

              • February 7, 2021 at 10:32 pm
              MelMel
              Participant

                After two combo infusions I developed drug induced liver injury. Five months later, I resumed on Nivo only. Initially, I was told that maybe a year later I could go back on combo if need be but that was not to be. I was totally bummed because I felt that three combos were optimal. In the time since, I have realized that I still had a great response for which I am grateful. The important thing to remember is that one does not need to receive all four combo treatments in order to reap the benefits.

                Hopefully your husband recovers and is able to continue.

                Melanie

                • February 8, 2021 at 4:30 am
                MelWave
                Participant
                  Thanks Melanie.

                  It is a question how many doses of combo one actually needs. In some people’s cases sounds like  two are enough. I saw that there is an ongoing trial to test this dosage as a general approach.

                  I seem to remember that you also had a lesion in your liver – do you mind telling how did it respond to the treatment? Did react or did it stay stable?

                    • February 15, 2021 at 12:32 am
                    MelMel
                    Participant
                      My liver lesions decreased by 50% in two months following two combo infusions. Then another 30% decrease in the next two months while I was on huge doses of steroids. This is why I firmly believe that if I was able to get the third combo they would be completely gone. Instead, we are stagnant but stable. I cannot help but wonder what will happen next?
                    • February 8, 2021 at 2:09 pm
                    JudiAU
                    Participant
                      looking back I was taking 20 mg hydrocortisone  for two combos and at least six single dose as well as when I went through radiation . I was the one who begged to reduce dosage (makes me fat, haha) and I reduced to ten. About three months later I begged for permission and was allowed to drop to 5. Hoping to cut in half again at my next appointment. I am still doing immunotherapy at the reduced dosage. Labs are fine. Nobody is using the words NED but my scans are clean.

                      with my unrelated brain tumor I was on a high dosage of dexamethasone and and ended up with sepsis when I finally got off it. Be careful with reducing the steroids.

                      • February 12, 2021 at 4:20 pm
                      Chipster
                      Participant
                        I developed hypophysitis after my 3rd dose of Ipi.  It sucked.  After about 6-8 weeks I was then switched to 12 months Nivo which I completed without problems.  I did need Synthroid briefly but no longer.  I am still steroid dependent and taking Hydrocortisone daily which will be permanent.  Hang in there.  Often times this means you are getting a very good immune response to your treatment and this should translate into a better cure rate.

                         

                        • February 14, 2021 at 7:11 am
                        MelWave
                        Participant
                          Yes hypophysitis is not the most pleasant experience…My partner also doesn’t tolerate high dose steroids well, which adds to his misery.

                          We are also hopeful that other pituitary functions will return, need to wait and see. Although thyroid is likely already destroyed after the first infusion.

                          In his case he needs to decide whether to take the third dose or go straight on maintenance nivolumab. The chance of additional high grade toxity (and needing more steroids) appears to be high.

                          Anyway thanks for  writing it is oddly comforting to hear from someone in the same situation.

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