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Opdivo Side Effect question
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Opdivo Side Effect question

› Forums › Cutaneous Melanoma Community › Opdivo Side Effect question

  • Post
    • June 25, 2019 at 6:49 am
    Sdmotorcop
    Participant
      Hello All,
      I had a run in with melanoma in 2004 (1.7mm, low back, WLE, snl nodes x3 negative). I did the dermatologist checks every 6 months for 5 years with no recurrence. I’m light skinned and surfed a lot when I was a teenager in the late 70’s (zinc oxide on the nose was the extent of my sunscreen… if had known then what I know now..). I have had 10 basel cells and 3 squamous cells removed along with a melanoma in situ in 2017. Needless to say the wife and I were very vigilant over the years watching my skin.

      This brings me up to February of this year. I noticed a small spot behind my left knee. Both the wife and I thought it was a blood vessel that had pushed to the surface (I had a bad MC crash and pretty much destroyed my left leg leaving me with some vascular damage.. hence thinking it was a blood vessel or varicose vein). It did not look like a melanoma at all. I went to the dermatologist approximately 54 days after I noticed the spot. The dermatologist said it looked like a granuloma and not to worry to much. We received the results of the biopsy in 3 days.. the following words. “Are you sitting down” were uttered and I knew it was ugly. Turns out it was a 4.3 mm nodular that had ulcerated. It took 54 days to go from nothing to something.
      I had the WLE on the back of my knee which was closed to the size of a silver dollar. Had three snl nodes marked but could only get to two. The first one in my upper thigh was full to the brim (7.3mm with no extranodal extension). The second node was completely clear. The tumor was braf and Pd-L1 negative. PET scan was negative for any hot spots. Doc has me listed as a stage 3C. He started me on monthly Opdivo for the next year. My first dose was on June 2nd with my next dose is next week. First set of labs is this Saturday. It’ll be interesting to see how my body is handling this medicine.

      Side effect questions
      The first issue is feeling like I’ve run a marathon… every day.. I was told that fatigue was to be expected.. but geez.. does the fatigue let up at some point?
      The second side effect is my shoulders and upper arms are painful as all heck in the evenings and mornings. Does anyone have insight as to what’s going on with that..

      The wife and family are very supportive which is nice. I have been reading through posts and am encouraged by the strength and resilience of the folks on this site.

      Fight the good fight!

      Bruce

    Viewing 6 reply threads
    • Replies
        • June 25, 2019 at 12:51 pm
        Hukill
        Participant
          Well, not to sound negative but I started treatment in June 2016. The fatigue came around August 2016 and has not left and may be worse now. It totally dominates everyday of my life.
          • June 25, 2019 at 1:19 pm
          ed williams
          Participant
            Hi Bruce, just to echo the last comment, been on Nivo since Jan of 2014 and fatigue has been my friend the whole time. Sore joints is also a very common side effects, some patients have to seek out a good arthritis specialist. The good news is that when Nivo works it can work for a long time, case and point would be my own journey!!! On the fatigue side some have had success with drug class like Ritaliin as a stimulant, check with your oncologist. I couldn’t use it since there is an increase risk of brain bleeds associated with use of these type of drugs after having cyberknife treatment to the brain. I didn’t think it was a good idea to risk having possible issues with my brain so I just deal with the fatigue as best as possible!!! Take Care!!!Ed
            • June 25, 2019 at 11:33 pm
            Edwin
            Participant
              Hopefully you will have less fatigue, after you have more Opdivo immunotherapy.

              For me fatigue has become less. I began receiving Keytruda immunotherapy in November 2015. After receiving an infusion of Keytruda, walking home made me very tired. I began receiving Yervoy and Opdivo on April 1, 2016. I had fatigue all the time, but I had much worse side effects. After switching to only Opdivo, I have fatigue for only a couple days after an infusion of Opdivo. I have been receiving Opdivo immunotherapy for over 3 years. Walking home from the cancer center after receiving an infusion of Opdivo does not make me tired. I will have an infusion of Opdivo tomorrow.

              • June 26, 2019 at 1:05 am
              MikeInAK
              Participant
                I have Opdivo infusion number 12 tomorrow.. I am on the 240ml every two-weeks schedule. Whereas I had a fair amount of post-infusion fatigue for a few days in the beginning, for the last six or so I have very little noticeable fatigue. I guess your mileage may vary, as it seems different side effects present for different individuals. I have no idea on your shoulder and upper arm pain, I have not experienced any of that.
                • June 26, 2019 at 2:22 am
                lkb
                Participant
                  I’ve had fatigue from both nivo and pembro. In my experience, however, it’s variable and exercise brings relief.

                  If you were surfing white-nosed at Southern California beaches in the 70s, please know that I was there too, snoozing on the sand and slathered in baby oil–for that healthy tan, of course.

                  Hope your treatment delivers and your side effects recede.

                  Lisa

                  • June 27, 2019 at 3:59 am
                  MelMel
                  Participant
                    I am on Opdivo biweekly infusion #4 this Fri. So far the side effects are far less than those of Yervoy and Opdivo. Fatigue, joint pain especially in the lower back, ankles and feet, and a slight rash on arms and back which is itchy at times. Immediately after my 3 rd infusion, I did have sharp shoulder and upper arm pain mostly at night but that went away after two nights. I find the fatigue is present 80% of the time.
                    Best of luck with your treatment.
                    Melanie
                    • July 1, 2019 at 12:44 am
                    Sdmotorcop
                    Participant
                      Thanks to all of you for the insight. It’s nice having “pioneers” that have lived this nightmare and can guide us newly diagnosed folks thru it.
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