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opdivo side effects?

Forums General Melanoma Community opdivo side effects?

  • Post
    blessd4x
    Participant

      My husband is on his 3 treatment of Opdivo and having many unpleasant side effects.  Curious as to what others are experiencing as well.

       

      thank you!

    Viewing 14 reply threads
    • Replies
        Bubbles
        Participant

          Tried to put this in one post but was blocked. Will try in parts.

          Link to anti-PD1 side effects generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

          Bubbles
          Participant

            Tried to put this in one post but was blocked. Will try in parts.

            Link to anti-PD1 side effects generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

            Bubbles
            Participant

              Tried to put this in one post but was blocked. Will try in parts.

              Link to anti-PD1 side effects generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

              Bubbles
              Participant

                Long boring post of my side effects and when they appeared during my 2 1/2 tyear nivo/opdivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

                Bubbles
                Participant

                  Long boring post of my side effects and when they appeared during my 2 1/2 tyear nivo/opdivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

                  Bubbles
                  Participant

                    Long boring post of my side effects and when they appeared during my 2 1/2 tyear nivo/opdivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

                    Bubbles
                    Participant

                      And finally…link to a recent post and excellent webinar by 2 melanoma experts regarding side effects and how to treat them:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                      I wish you and your husband my best. Celeste

                      Bubbles
                      Participant

                        And finally…link to a recent post and excellent webinar by 2 melanoma experts regarding side effects and how to treat them:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                        I wish you and your husband my best. Celeste

                        Bubbles
                        Participant

                          And finally…link to a recent post and excellent webinar by 2 melanoma experts regarding side effects and how to treat them:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                          I wish you and your husband my best. Celeste

                          emagdnim83
                          Participant

                            Watch out for heart issues. There is at least one documented case of deadly heart failure with pembrolizumab which is very similar to nivolumab (opdivo): 

                            http://www.ncbi.nlm.nih.gov/pubmed/25901283

                            My father had a dangerously low heart beat rate (38) after his first dose of nivolumab. He suffers from atrial fibrillation for at least 20 years now so maybe people who already have heart issues should be careful while on immunotherapy. He also developed pneumonitis and fatigue for some weeks after his infusion. He didn't get a second dose.

                            Best of luck to you and your husband.

                            emagdnim83
                            Participant

                              Watch out for heart issues. There is at least one documented case of deadly heart failure with pembrolizumab which is very similar to nivolumab (opdivo): 

                              http://www.ncbi.nlm.nih.gov/pubmed/25901283

                              My father had a dangerously low heart beat rate (38) after his first dose of nivolumab. He suffers from atrial fibrillation for at least 20 years now so maybe people who already have heart issues should be careful while on immunotherapy. He also developed pneumonitis and fatigue for some weeks after his infusion. He didn't get a second dose.

                              Best of luck to you and your husband.

                              emagdnim83
                              Participant

                                Watch out for heart issues. There is at least one documented case of deadly heart failure with pembrolizumab which is very similar to nivolumab (opdivo): 

                                http://www.ncbi.nlm.nih.gov/pubmed/25901283

                                My father had a dangerously low heart beat rate (38) after his first dose of nivolumab. He suffers from atrial fibrillation for at least 20 years now so maybe people who already have heart issues should be careful while on immunotherapy. He also developed pneumonitis and fatigue for some weeks after his infusion. He didn't get a second dose.

                                Best of luck to you and your husband.

                                blessd4x
                                Participant

                                  Thank you all for the feedback!  My husband is having severe pains in his pelvic area, "hot flashes" if you will, constipation, fatigue and now having some pretty serious memory issues.  I know theres a laundry list of side effects and not everyone gets them all.  Of course, Im concerned about them along with every cough and sneeze.  Its a roller coaster as you all know. 

                                  blessd4x
                                  Participant

                                    Thank you all for the feedback!  My husband is having severe pains in his pelvic area, "hot flashes" if you will, constipation, fatigue and now having some pretty serious memory issues.  I know theres a laundry list of side effects and not everyone gets them all.  Of course, Im concerned about them along with every cough and sneeze.  Its a roller coaster as you all know. 

                                      emagdnim83
                                      Participant

                                        Uh oh, "serious memory issues" could also be a symptom of brain mets or a stroke (maybe caused by bleeding brain mets)!  Please let this be monitored asap.

                                        emagdnim83
                                        Participant

                                          Uh oh, "serious memory issues" could also be a symptom of brain mets or a stroke (maybe caused by bleeding brain mets)!  Please let this be monitored asap.

                                          blessd4x
                                          Participant

                                            thank you for that!  He even got into MY car the other day to go somewhere.. He's never driven my car..his last MRI in september showed a very small spot in the brain that could not be determined what it is because it is so small.  At that point they were not concerned.  He's supposed to get another PET scan in January. The memory issues started a couple weeks ago and are getting worse.

                                            blessd4x
                                            Participant

                                              thank you for that!  He even got into MY car the other day to go somewhere.. He's never driven my car..his last MRI in september showed a very small spot in the brain that could not be determined what it is because it is so small.  At that point they were not concerned.  He's supposed to get another PET scan in January. The memory issues started a couple weeks ago and are getting worse.

                                              blessd4x
                                              Participant

                                                thank you for that!  He even got into MY car the other day to go somewhere.. He's never driven my car..his last MRI in september showed a very small spot in the brain that could not be determined what it is because it is so small.  At that point they were not concerned.  He's supposed to get another PET scan in January. The memory issues started a couple weeks ago and are getting worse.

                                                ed williams
                                                Participant

                                                  There is nothing that I have come across in my research that would suggest that the symptoms you are talking about as far as memory would be associated with Opdivo. They do list under 5 to 20% chance of happening "confusion" caused by low blood phosphate level. However my own experience tells me that brain mets pop up fast and the sooner treated the better the outcome. I would push for an appointment with your oncologist to discuss the side effects he is having. With melanoma and Pd-1 drugs communication with your oncologist is very important. Wishing you the best!!!! Ed

                                                  ed williams
                                                  Participant

                                                    There is nothing that I have come across in my research that would suggest that the symptoms you are talking about as far as memory would be associated with Opdivo. They do list under 5 to 20% chance of happening "confusion" caused by low blood phosphate level. However my own experience tells me that brain mets pop up fast and the sooner treated the better the outcome. I would push for an appointment with your oncologist to discuss the side effects he is having. With melanoma and Pd-1 drugs communication with your oncologist is very important. Wishing you the best!!!! Ed

                                                    ed williams
                                                    Participant

                                                      There is nothing that I have come across in my research that would suggest that the symptoms you are talking about as far as memory would be associated with Opdivo. They do list under 5 to 20% chance of happening "confusion" caused by low blood phosphate level. However my own experience tells me that brain mets pop up fast and the sooner treated the better the outcome. I would push for an appointment with your oncologist to discuss the side effects he is having. With melanoma and Pd-1 drugs communication with your oncologist is very important. Wishing you the best!!!! Ed

                                                      emagdnim83
                                                      Participant

                                                        Please call your oncologist NOW.

                                                        emagdnim83
                                                        Participant

                                                          Please call your oncologist NOW.

                                                          blessd4x
                                                          Participant

                                                            I called her and she wants to do an MRI asap.  My husband is refusing…..

                                                            blessd4x
                                                            Participant

                                                              I called her and she wants to do an MRI asap.  My husband is refusing…..

                                                              emagdnim83
                                                              Participant

                                                                Maybe ask her how about giving him Dexamthasone? This is a serious situation – if brain mets are bleeding damage could be permanent if he isn't treated as soon as possible. Please try to convince him.

                                                                emagdnim83
                                                                Participant

                                                                  Maybe ask her how about giving him Dexamthasone? This is a serious situation – if brain mets are bleeding damage could be permanent if he isn't treated as soon as possible. Please try to convince him.

                                                                  blessd4x
                                                                  Participant

                                                                    Im definitely trying to convince him. Im so lost and angry.  He doesnt see what I see happening.

                                                                    blessd4x
                                                                    Participant

                                                                      Im definitely trying to convince him. Im so lost and angry.  He doesnt see what I see happening.

                                                                      blessd4x
                                                                      Participant

                                                                        Im definitely trying to convince him. Im so lost and angry.  He doesnt see what I see happening.

                                                                        emagdnim83
                                                                        Participant

                                                                          Maybe ask her how about giving him Dexamthasone? This is a serious situation – if brain mets are bleeding damage could be permanent if he isn't treated as soon as possible. Please try to convince him.

                                                                          blessd4x
                                                                          Participant

                                                                            I called her and she wants to do an MRI asap.  My husband is refusing…..

                                                                            emagdnim83
                                                                            Participant

                                                                              Please call your oncologist NOW.

                                                                              emagdnim83
                                                                              Participant

                                                                                Uh oh, "serious memory issues" could also be a symptom of brain mets or a stroke (maybe caused by bleeding brain mets)!  Please let this be monitored asap.

                                                                              blessd4x
                                                                              Participant

                                                                                Thank you all for the feedback!  My husband is having severe pains in his pelvic area, "hot flashes" if you will, constipation, fatigue and now having some pretty serious memory issues.  I know theres a laundry list of side effects and not everyone gets them all.  Of course, Im concerned about them along with every cough and sneeze.  Its a roller coaster as you all know. 

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