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Eye pain Anybody have this from Opdivo?? really hurts

Forums General Melanoma Community Eye pain Anybody have this from Opdivo?? really hurts

  • Post
    DoubleTT
    Participant
      Cant see the Oncology Ophthalmologist at Princess Margaret Cancer Centre until this coming Friday. They did say if vision goes blurry show up at the emergency centre within the centre. Have any of you had this? Its awful and I only just finished the Opdivo 40 days ago. More joint pain than ever and now this. Scans were stable so that’s good. But been reading possible uveitis etc…????
      thanks for any knowledge…Tracey
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    • Replies
        Bubbles
        Participant
          Sorry you are dealing with this, Tracey. There are some other recent posts just below yours with folks dealing with the difficulty and frustration of new and/or increased side effects AFTER coming off immunotherapy! Crazy stuff, huh? But, it is real and happens (I think) more than docs/researchers even realize. Though from experience, all your side effects will gradually get better, it will just take some time.

          As to your vision issues – yes, immunotherapy (as is noted in this old report, ironically on the “safety” of the combo: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/for-melanoma-ipi-and-nivolumab-bms-anti.html ) can cause uveitis/choroiditis – though choroiditis is usually painless. Inflammation of the optic nerve can also cause pain and is possible. I hate that you have to wait until Friday to see the ophthamologist. I would take them at their word and if things got any worse before then, show up at the ER.

          Sorry. Hope you are better soon. Celeste

            DoubleTT
            Participant
              ugggh Celeste so it got worse. Sunday night called the clinic line at Princess Margaret in Toronto. First thing yesterday morning they called to have me come in as soon as I could. So it’s not uveitis but a small inflammation that can be fixed. They gave me eye steroids and antibiotic drops. Only for one week. I have been having lots of achey joint pain eventhough I’ve finished the Nivo. So I’m inflamed everywhere which is normal for me throughout my treatment journey. But can’t even imagine the pain if my inflammation was even a slight bit worse than what they said. I’m so lucky to have these docs at Princess Margaret Cancer Centre. Any eye pain they said to tell them right away it can be the difference of losing your sight. thanks so much for your note. I appreciate it so much..Tracey
            MelMel
            Participant
              Hi Tracy. Pain of any sort is horrible but I can just imagine the eye pain. I have many side effects but not yet this particular one. During my readings, I came across this U of Michigan study which may be of some help.

              https://labblog.uofmhealth.org/rounds/ophthalmologists-link-immunotherapy-a-serious-eye-condition

              The cases of three recent patients, published by University of Michigan Kellogg Eye Center in JAMA Ophthalmology, highlight the issue. Patients receiving immune checkpoint inhibitors developed uveal effusions and eye inflammation that affected their vision.

              Although it is rare, knowledge of this risk is important both for the ophthalmologists who treat it and for the oncologists prescribing the anti-cancer treatment, say Michigan Medicine researchers.
              “In our three patients who had been receiving these immune checkpoint inhibitors, we noticed large uveal effusions. In addition, there was anterior chamber inflammation in two of our patients,” says Hakan Demirci, M.D., the Richard N. and Marilyn K. Witham Professor at the University of Michigan Kellogg Eye Center.

              All three patients were receiving an anti-PD-1 or anti-PD-L1 antibody immune checkpoint inhibitor drug: atezolizumab, nivolumab or pembrolizumab.

              Says Merina Thomas, M.D., the senior vitreoretinal surgery fellow and a clinical lecturer at Kellogg: “[Effusions] happened quickly, between one and three months after the patients had received at least two infusions of the immune checkpoint inhibitors. That raised our suspicion.”

              There’s no treatment for the side effects of the immune checkpoint inhibitors other than stopping the medication. “We asked each patient’s oncologist if the patient’s immune checkpoint inhibitor could be discontinued,” says Thomas.

              “But not all patients can stop the therapy, because they have widespread, life-threatening cancer,” adds Demirci.

              In two of the three patients, six weeks to three months after stopping the medication, the uveal effusions had improved and the affected eye looked normal.”

              Immune response in the eye
              In the wall of the normal eye, there are three layers with no fluid among them. But inflammation in the eye can cause the layers to swell and fluid to accumulate between the layers. Uveal effusions can occur when patients have eye injuries or operations, receive certain drugs, or for unknown causes. When the uveal effusion involves the fovea, where eyesight is the sharpest, it affects the vision.

              In a previous review of 576 patients treated with nivolumab, 71 percent had side effects such as fatigue, itching and problems with the gastrointestinal or endocrine systems. Another study noted that uveitis and dry eye were the only ocular toxicities in patients taking PD-1/PD-L1 inhibitors, with the incidence of uveitis ranging from 0.3 to 0.6 percent, and no specifics regarding the pattern or management of the uveitis.”

              I believe that one uses steroids to help and while pain is resolved quickly, it may take weeks for the condition to completely resolve. I would imagine it also depends which part of the eye is affected. Hopefully you just have anterior chamber inflammation. The good thing is that they do get better with time.
              Hope you can get in on a short notice cancellation list and be seen ASAP.
              Melanie

                DoubleTT
                Participant
                  Hello Melanie. I called the clinic line at hospital…they got me in first yesterday Monday. Luckily after reading your note I’m truly am at the right and best centre in Canada The Princess Margaret Cancer Centre insist you use their specialist while dealing with our melanoma…Large team at their oncology eye clinic. Got the two drops but go back in a week for another check. Scared the crap out of me. Eye pain is a helpless feeling. Thanks for your info. Much appreciated. !!! Tracey
                JudiAU
                Participant
                  I’m sorry. Vision issues are so scary. I lost my vision for about six months a year ago and the developed glaucoma from steroids. (Brain tumor, not melanoma related) it was really terrifying and I hope your vision and pain resolve quickly. I didn’t realize this was an issue and I’ll monitor my vision closely again. Thanks for sharing.
                    DoubleTT
                    Participant
                      So sorry to hear this… But yes ipi, nivo and keytruda the immunotherapies can cause bad side effects to the eyes. They told me (now) that the FDA are including it as a Adverse Issue. Now I know why they checked my eyes once for a clinical trial and then prior to starting Nivo for a base line . Are you better now???? take care Tracey
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