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Nivolumab (Obdivo) on going side effects

Forums General Melanoma Community Nivolumab (Obdivo) on going side effects

  • Post
    BKPmax
    Participant
      Stage 4 Melanoma to current remission.
      Total Infusions: 1 of Nivolumab & Yervo, then 14 Nivolumab alone.

      It’s been 4 month after being taken off Nivolumab (Opdivo) and I still get rashes, numbness, etc. It feels like Opdivo is still racing around my system. Some symptoms are even more strong than before!
      (Numb / weak hands). What’s the knowledge base of side effects post Nivolumab treatment?
      Thanks!
      Blake

    Viewing 6 reply threads
    • Replies
        BKPmax
        Participant
          Dang….Wish there was a way to edit my posts! (SP errors!)
          mandyjill
          Participant
            I know it’s different for everybody, but I experienced significant side effects for about 10 months after completing the treatment.
              BKPmax
              Participant
                Thank you! you give me hope !
              Hukill
              Participant
                I had 5 combos, 52 nivo and has been 13 months since my last. I still have all the side effects I had while on treatment. The only one that may have change is the fatigue and it has gotten worse, totally controls my life.
                  BKPmax
                  Participant
                    Gosh, no fun. Sorry for your difficult fatigue. Hoping you improve.
                    lkb
                    Participant
                      Hukill, please forgive me if you thought of this maybe 11 centuries ago, but have you tested for seemingly unrelated levels? I recently learned I’m iron-deficient, which might or might not explain my RLS/fatigue/cold extremities and might or might not be treatment related. (Only 3% of people become anemic while on Pembro.) Currently waiting for iron infusions, which will give more info. Wishing you the best..
                    JudiAU
                    Participant
                      Hello, I’m stage 4 and starting “the combo” Friday. Can you give me an idea of intense this numbness? Is it constant? Is it intermittent w/o warning? Do you feel safe to drive or use a kitchen knife?

                      I feel like I’m walking into the jaws of a lion because I am symptom free but also recovering from unrelated brain tumor/stroke.

                        BKPmax
                        Participant
                          My numbness is fairly constant and not very bad. I can function 100% with it. Hoping the best for your treatment.
                        Cindy Lou
                        Participant
                          I took 12 treatments of Opdivo, the last one in May of this year. Opdivo was discontinued due to severe side effects, only after I consulted a melanoma specialist at Mayo in Jacksonville who advised my local oncologist to do so. So, after 3 months, I still have a severe itchy rash, the fatigue is less, and I have not had a recurrence of diverticulitis/ colitis since June. Good luck to you, my fellow melanoma warrior!
                            BKPmax
                            Participant
                              My best to you Cindy Lou!
                            GeoTony
                            Participant
                              Hi Guys,
                              I managed 3 out of 4 double dose’s (Ipi/Nivo) due to rash/breathing issues, also the fatigue was bad, but I then then followed up with the full 52 nivo dose’s without any issues, well no serious issues, eyelashes/eyebrows/beard went white. I achieved stable, currently on targeted CDK4/6 trial, still stable but can’t shake the beast totally.
                              So it’s really different for everybody.
                              Tony
                                BKPmax
                                Participant
                                  Thanks Tony,
                                  Hope you shake that beast!
                                MelanomaMike
                                Participant
                                  Your right on schedule brother Blake, pro’s & con’s of Immunal, Chemo and all other BioChemo oncology drugs, iv been off (cancelled rather) from my last med Opdivo (started with the combo of Yervoy) after Opdivo bag #20, i was stopped due to disease progression, but, what im gettin at, my Pituitary is still Kentucky Fried from the Yervoy, ill be treated with Hydro’s for the duration of my life, i STILL dont produce Cortisol on my own! Still!.. pros & cons brother, pros & cons….
                                    BKPmax
                                    Participant
                                      Thank you!
                                      BKPmax
                                      Participant
                                        Thank you!
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