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Cognitive decline
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Cognitive decline

› Forums › General Melanoma Community › Cognitive decline

  • Post
    • June 2, 2024 at 6:34 pm
    gmschmidt
    Participant
      I’m wondering about any experiences anyone has had with various therapys causing cognitive decline? My husband started with opdivo/nivo for the first two years of stage 4 melanoma, then had a year off, then was on opdivo and yervoy for a year or so. Next came 8 months of oral thereapy, a braftovi/mektovi combo. Year six he was put back on opdivo infussions combined with a different oral thereapy, Lynparza. There was a little progression so they added the braftovi/mektovi back in on top of the other two therapies. How could all that medicine over seven years not mess with your brain? He is actually doing pretty well overall in regards to other side effects, but I’ve been noticing congnitive decline over the last year, and especially the last 3-4 months. However, I wouldn’t want to assume it’s from all the medications if it isn’t that common of a side effect. I would hate to ignore early signs of dementia or alzheimer’s disease, (he’s in his mid 60’s). Of course if I mention something to him he won’t believe me, or think I’m exaggerating. I haven’t had a chance to mention it to his Dr., (because he’s always with me), but will make a call if it keeps getting worse. I know nobody can tell me if the meds he’s been on have caused this, but I’m just wondering if others have experienced cognitive issues. With him it’s mainly confussion, memory loss, and just a loss of sharpness. The good news is with all these different thereapies he’s currently on, there’s been no progression for the last nine months, and we well into year seven! Thanks in advance.
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        • June 3, 2024 at 11:21 pm
        JudiAU
        Participant
          I’ve noticed it with myself. But I have also had multiple intense crainiotomies, have an unrelated brain tumor, had a stroke, etc. I have taken many heavy rounds of steroids and current rounds of anti seizure meds. Immunotherapy drugs were hard but steroids and anti seizure meds are just as hard for me. I have picked up a lot of damage a long the way but it is hard to figure out where it is from.

          Swelling and brain Mets can be a common reason for brain changes but I’d assume he is getting MRIs every three months. I think it is more likely that you are seeing the effect of drugs (short, longer term) than early onset Alzheimer’s which is even more rare. Read the labels again for drugs inserts and talk to your doctor.

            • June 4, 2024 at 7:23 pm
            gmschmidt
            Participant
              Yes, he does get MRI’s regularly. I probably should have mentioned that his cancer is in his lymph nodes.

              Thanks for your reply, and I wish you the best.

            • June 11, 2024 at 11:35 pm
            M.E.
            Participant
              This caught my ear!
              I was thinking the same thing observing my husband.

              Noticeable change in ” sharpness”.
              2.3 years on yervoy opdivo
              Braftovi mektovi since November.
              Also generous amounts of painkillers.

              Somedays he’s very strong and I second guess my observations then just like that he’s very dependent and simple. no rhyme or reason. Definitely accepting this is new normal.

              He also just turned 70.

              • June 15, 2024 at 7:02 pm
              Edwin
              Participant
                After my first opdivo and yervoy immunotherapy for stage 4 melanoma 8 years ago, I could not concentrate enough to read. After a month or two, I could read again. There was melanoma in several of my bones, but none in my brain.
                  • June 15, 2024 at 7:39 pm
                  gmschmidt
                  Participant
                    It sounds like your husband and mine, are (or have been) on some of the same treatments. My husband doesn’t take pain killers, but takes tylenol or other pain relievers very heavily. The cognitive decline could be from so many things, or a combination of things. It’s really not listed as a common side effect of those treatments, that I have read, but so many chemicals in one’s body seems like it would mess with your brain. As I mentioned in my original post I would hate to blame it on the cancer or treatment drugs, and ignore the possiblity that it could be dementia or alzheimer’s disease. Although, I’m not sure if there’s much that could be done for him if he had one of those underlying medical conditions. Thanks for your input, it’s all quite a challenge.
                  • June 20, 2024 at 3:47 am
                  guynamedbilly
                  Participant
                    It has happened to me a few times. I was on the NKTR trial a few years ago. I was on it for about 8 months and I realized that my thinking was affected, but it wasn’t until I’d been off of it for about 2 months that I realized I didn’t remember most of the first four months of the trial.

                    I’ve had times where I knew my thinking wasn’t reliable, so I intentionally avoided making important decisions during that. You just have to keep in mind that these are systemic meds, so they have wide ranging possible effects. Usually it’s minor or nonexistent side effects. I’ve never had anything like that on IPI or NIVO.

                    • September 29, 2024 at 1:46 am
                    mmbraddock
                    Participant
                      I am 49 and just did two rounds of ipi/nivo and felt like I had acute early onset dementia. I was always searching for words. Off treatment and cognitively back to my 40-something self. These drugs are no joke. Hope it gets better!
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