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Need Advice on different treatment please
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Need Advice on different treatment please

› Forums › General Melanoma Community › Need Advice on different treatment please

  • Post
    • June 7, 2017 at 9:36 pm
    smiller
    Participant

       My husband made it through three treatments on the opdivo/yervoy combo.  Had to stop because of the side effects he was experiencing.  We are meeting with his doctor next Wednesday to discuss other options. He mentioned trying Keytruda or going ahead with opdivo alone.  Any help/suggestions will be helpful in making a decision.  By the way–the treatments that he had did make a difference in the size of the tumors–they all shrunk except adrenal glands and doctor said they still had the possibility of shrinking.

       I learn so much from this board–thanks to all who post. I rejoice when I read the good news of someone responding to their treatment and I am sad when someone has to post that treatment has to stop because it didn't help.

      Thank you!

      Jim's wife

       

       

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    • Replies
        • June 7, 2017 at 10:43 pm
        jennunicorn
        Participant

          It is definitely not uncommon to skip the last combo infusion and go straight to Nivo (Opdivo) maintanence. Sorry he's dealing with side effects, I had the most side effects right after my 4th combo infusion, but since being on Nivo alone I haven't dealt with any major side effects and have felt a lot better. Glad to hear it's working for your husband.

            • June 8, 2017 at 6:00 pm
            ReallyAgain
            Participant

              What were the side effects?

               

              Best,

              • June 8, 2017 at 6:36 pm
              smiller
              Participant

                 My husband's side effects were –pancreatic issues, fever, vomitting, rash, diarrhea, extremely dry mouth and he lost 38 lbs.

                Jim's wife

                • June 8, 2017 at 8:20 pm
                jennunicorn
                Participant
                  The worst I’ve experienced was alost 3 week fever, no appetite, liver enzymes high, inflammation everywhere including spleen. But, it all went away and I just deal with minor side effects now. All the side effects I’ve experienced are in my profile if you want more details.
                • June 7, 2017 at 10:54 pm
                sister of patient
                Participant

                  Hi – So glad your husband is responding!! My sister could only have 2 combo infusions before a major side affect from ipi but has done really well since then on nivo only. Best wishes to you both!

                  Barb 

                    • June 8, 2017 at 6:00 pm
                    ReallyAgain
                    Participant

                      What were the side effects?

                      Thanks!

                      • June 8, 2017 at 10:17 pm
                      sister of patient
                      Participant

                        Hi – The ipi attacked her retinas in her eyes unfortunately and that was the end of it (the damage is permanent). But even the two infusions (we believe) made a difference 🙂

                        Barb

                      • June 7, 2017 at 10:57 pm
                      Ridingaroundwith27Jennifers
                      Participant

                        Hi.  I had only two treatments if Yervoy/Opdivo before stopping due to side effects.  Like your husband I had many tumors shrink from the treatment.  After a brain tumor appeared 5 months after stopping treatment I was able to restart the Opdivo and have seen slow but steady tumor shrinkage with the exception of the brain tumor which was removed surgically and then treated with radiation.  So far I haven't had side effects from the Opdivo.  Good wishes to you and your husband.

                          • June 8, 2017 at 6:01 pm
                          ReallyAgain
                          Participant

                            What were the side effects?

                             

                            Thanks!

                            • June 14, 2017 at 2:27 am
                            lshepard27
                            Participant

                              How long did you have the treatment before stopping?  DId you have 2 treatments of Yervoy/Opdivo and then Opdivo only for a long time?  My partner has stage 4 melanoma with three tumors in the brain and some in lungs and liver.

                              He only could handle one treatment of Yervoy/Opdivo.  And is now on Opdivo every two weeks. No side effects. And will be for the next 18 months. He's part of an experimental treatment at Georgetown.  He had surgery to remove three brain tumors. The immunotherapy seems to be shrinking the 3 remaining in the brain.  This is tough stuff.    

                            • June 8, 2017 at 9:59 pm
                            Mat
                            Participant

                              I had 3 combo infusions in Jan-March 2016 and then moved to Opdivo only.  I was able to tolerate the every 2-week schedule for the balance of 2016 while managing side effects.  In 2017, I moved to an every 12-week schedule due to side effects (mostly arthritis).  I have stable disease and possibly better.

                              • June 9, 2017 at 9:24 am
                              tanusharma
                              Participant

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