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Question for Opdivo Patients
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Question for Opdivo Patients

› Forums › General Melanoma Community › Question for Opdivo Patients

  • Post
    • May 21, 2018 at 3:35 am
    Susanlee528
    Participant

      Hi all! I just had my 6th Opdivo treatment and it was the worst one yet.  The fatigue has gotten worse each time. After this last one, I slept for 26 hours, got up and ate, and then slept for 9 more. Is that typical? Does it keep getting worse? I keep hoping it will even out and I will adjust at least a little bit, but so far it has just gotten worse each time! I’m having it every other week and don’t want to go to monthly in case it’s worse. Is there any hope in sight??

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    • Replies
        • May 21, 2018 at 1:01 pm
        ed williams
        Participant

          Hi Susan, fatigue has been my friend almost from the first treatment. You might be setting records for sleeping, that being said, make sure that Oncology team is experienced with endocrine issues. The way I try and describe how I feel to friends is that I feel like I have a hangover and just want to crash. I get days that are better than others, usually the second week after treatment is better than first week. On the flip side it has worked wonders on the melanoma so that keeps me going back for more!!! Best Wishes!!!Ed

            • May 21, 2018 at 3:12 pm
            Newmanbell
            Participant

              My husband is about 6 months with Opdivo and for the most part he does well.  He is very tired and moves pretty slowly, however, he does offset his tiredness every say 3 to 4 days with a very low dose of prednisone.  That seems to get him over the hump for a few days and feel better.

               

              Donna

            • May 21, 2018 at 1:55 pm
            Raco
            Participant

              Sorry to hear about your Fatugue issues.

              My second treatment I slept for 17 Hrs.

              My Third was uneventful only some nausea during second week which has carried up to today

              I just had my 4th treatment last thurs and again my only issue is nausea. Iam taken zofran, help some but not much.  Overall, I do find myself taking small naps during the day but none for hours long.

              My Dr. told me that I am only 1 in 100 and symptions are different for all.  I am hoping my stay as they are.

              Wish you the best. I look forward to hearing what others comment about their symptions are.

              RACO

                • May 21, 2018 at 2:24 pm
                Susanlee528
                Participant

                  Thanks Ed and RACO for sharing your experience. With all of the amazing results that Opdivo has had, I am definitely thankful to be able to be treated with it, no matter the fatigue. And I make sure to plan ahead so I have the time to sleep. I just hope this is the extent of it. I felt like a hibernating bear!  There are much worse side effects I could be having so I am trying hard not to be a whiner about it or feel sorry for myself. But it gets hard, especially on the kids. I appreciate having a place like this to vent instead of whining to my family even more than I already do. 🙁

                • May 21, 2018 at 4:15 pm
                Foothillfoundling
                Participant

                  Hi All,  my honey had his first 480 Nivo infusion on 5/9/2018.  He is very tired.  Sleeping 15-18 hours a day. No other side effects that I have noticed as of yet.  He has spurts of energy and planted flowers yesterday which was so very nice.  It seems this is very common per all your posts.  Thanks for your updates and info.  The upside is I have been getting more sleep too!  I even went to bed by midnight last night and slept 8 hours.  Taking this day by day.  

                  • May 21, 2018 at 5:54 pm
                  vp sf
                  Participant

                    Hi Susan.  My husband's doctor said they could prescribe Ritalin if his fatigue became debilitating. Something to ask about if you wish…  V.

                    • May 21, 2018 at 6:01 pm
                    Hukill
                    Participant

                      I have had 46 doses and the fatigue is horrible. Neither my dr or my wife understands just how bad it is plus I have insomnia so I go to bed but can't go to sleep. Been given every prescription and a CPAP but nothing works. I fall asleep at my desk at work almost everyday and sleep during my lunch. 3 more double doses and another scan and if it is clean I will be done.

                      • May 22, 2018 at 5:42 pm
                      GeoTony
                      Participant

                        Hi Susan, fatigue is one of my side effects, usually I'm "weary" for the first couple of days, not necessarily sleepy, more worn down and grumpy, I actually find forced exercise helps, forced in that I really have to force myself to do anything, I’m now around the 30th dose and it has improved over time, or I've gotten used to the feeling and adjusted to the new normal.

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