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Opdivo + Fatigue
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Opdivo + Fatigue

› Forums › General Melanoma Community › Opdivo + Fatigue

  • Post
    • May 7, 2019 at 1:20 am
    201Don
    Participant
      I have been lurking a while and it’s time for me to post. I was diagnosed in July 2017. Had original site and three nodes removed
      and all came back clear (margins and nodes). Original staging was 2b. I started quarterly CT and PET scans and was fine until early
      January 2019, when A nodule appeared in my lower left lung (7mm). In February I had a diagonal resection to remove the nodule
      and margins. The nodule was Melanoma. So now I am stage 4 and can now be treated with immunotherapy. I just had my second
      infusion with Opdivo. Two down 10 to go.. So far the only issues I have had with it have been extreme fatigue and nausea. The nausea
      is not that bad, but the fatigue is tough. I have had fatigue non stop, there are times when it is less severe but
      it is always there. All in all I am lucky. As far as we know I am cancer free and this treatment will hopefully help me
      stay that way. I was told if I did nothing I was looking at 80% likelihood that Mel would be back, but if I did 12 rounds
      Of Opdivo that would drop it to 35-40% likelihood. I think that it is worth it. So my question is about the fatigue. Are there
      things to do or try that help minimize it?
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    • Replies
        • May 7, 2019 at 1:04 pm
        Hukill
        Participant
          I had 5 ipi/nivo combos and then 52 nivo. My last dose was in August 2018. The fatigue has not gone away and is horrible. I try to explain to family and doctors how bad it is but nobody understands. Energy boosters, caffeine, diet and exercise have zero effect. I have the double wammy because I have insomnia also so I lay down to sleep and 5 hours later still have not gone to sleep. I have been prescribe every sleep aid, tried every over the counter medicine and every old wives tell I can find. Nothing helps.
            • May 7, 2019 at 11:56 pm
            201Don
            Participant
              Yes it is weird. Sleep does not seem to help and it does not go away.
              • May 10, 2019 at 4:30 am
              lkb
              Participant
                Hukill, I’m on Pembro and struggle with both fatigue and insomnia. For the latter, I’ve had good results from making myself get out of bed if not asleep in 20 minutes. The first few nights are hard because I’m in and out of bed several times. However, when I stick to it, I eventually start sleeping consistently, at least for awhile. This is just one part of Cognitive Behavioral Therapy for insomnia. I also record my waking hours in the night, etc. . It’s the only strategy that has been helpful to me. Wishing you luck.
              • May 7, 2019 at 1:31 pm
              ed williams
              Participant
                Hi there 201 Don, there is some research out there that Ritalin (class drugs) can help with stimulation and increase energy levels. I haven’t tried them based on the fact that I have had SRS radiation to the brain back in 2013 and this class of drugs can increase risk of brain bleeds according to my Oncologist, who looked up possible negative interactions of SRS and Ritalin for me a few years back. I have been on Nivo since Jan of 2014 and fatigue has been my friend all this time, it can be tough at times but way better than the alternative!!!! Best Wishes!!!Ed
                  • May 7, 2019 at 11:50 pm
                  201Don
                  Participant
                    Thanks for the reply. Mine seems to be at its worst early in the day. I usually feel the best early to late evening.
                    I am trying to learn to just push through and go,but it is tough when you feel exhausted. When the nausea kicks
                    in along with the fatigue it makes it tough.
                    Don
                  • May 10, 2019 at 3:34 am
                  jennunicorn
                  Participant
                    Fatigue is……. not fun. I was on some form of immunotherapy for a couple of years. Have been off of treatment for a year and a half and I still deal with fatigue. I have tried all the things… diet, exercise, meditation, etc. Have had tons of blood work looking for reasons to why I am still experiencing fatigue at this level, nothing to find there. Fortunately it is not every day for me now, but I get about one week or two each month where it’s very difficult to deal with. I have given in to my last resort which is stimulant drugs. I have been prescribed Adderall and I will say that when I take it, it helps a lot. I don’t like to take it every day, so I save it for days when I know my work day is going to need my full attention and focus. Otherwise I push through the fatigue fog the other times. Wishing you the best, hopefully the fatigue will get better without needing drug intervention for it.
                      • May 10, 2019 at 11:02 pm
                      201Don
                      Participant
                        Hi Jenn, did you notice it as being worse certain times of day? Mine seems to be
                        worse in the first half if the day. Also if I push through it and sustain work or
                        other activity for 8 or 9 hours, it completely wipes me out the next day.
                        • May 11, 2019 at 1:45 am
                        jennunicorn
                        Participant
                          Yes it is worse for the first half of the day for me as well. And these days by the end of the week, like right now, I am totally wiped out. During treatment if I had a really busy day one day, the next day I was definitely wiped out as well. Nowadays it’s a little easier for me to continue pushing on multiple days.
                        • June 8, 2019 at 10:51 pm
                        Zelda_Scotland
                        Participant
                          Hi Don,
                          I’ve had 10 bi-weekly infusions now with 16 still to go. My fatigue is worse on treatment day and the 2 days afterwards. I need to give in to it then and just sleep or rest. If i’m having a good day I might get by with a ‘light’ day and an afternoon nap. If I look after myself and take it easy I pick up again and have more energy. On my ‘good’ week I try and do some exercise, get outside and go for a fair walk. I’m trying to study as well as work part-time and I find the fatigue (and headaches) worse when i have really had to concentrate hard or read a lot. I’m also hypothyroid now which I think makes the fatigue worse. Really I just try to manage it by saving my energy for things I really need to do and pacing myself with naps/rest times.
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