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Pembro Side-Effects

Forums General Melanoma Community Pembro Side-Effects

  • Post
    Kimbo
    Participant
      I would so appreciate hearing how anyone is doing on Keytruda? The side-effects lists looks rather daunting. Thanks so much!
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    • Replies
        ed williams
        Participant
          Kimbo, the good news is the list is long but for most melanoma patients on single agent Pd-1 drugs like Pembrolizumab (keytruda) or Nivolumab (Opdivo) only about 15% will have to deal with a serious grade 3 or 4 side effect also called IRAE (immune related adverse event) that requires medical intervention usually treated with steroids. Many will have low grade adverse events that are a pain but will not stop treatments. Skin issues with rash visible and some times not visible and diarrhea are probably the two most frequent and occur early in treatment. I have a link for you that talks about serious side effects and how to manage them by a leading melanoma oncologist (Dr. Weber). It is a great guide and shows how immune check point inhibitors like Keytruda can cause issues in most of the system of the human body and what signs to look for in blood tests and on scans. https://www.youtube.com/watch?v=37ze8NJGFhk
          Kimbo
          Participant
            Thank you! This was most helpful!!
            ThinkingPositive
            Participant
              Hi Kimbo,
              Ed gave a great response and I’ll chime in with my experience. I was on Keytruda for 18 months and experienced several grade 1 adverse events, thankfully not at the same time. After every 6 week infusion, there was a “bloom” of symptoms. Sometimes it was a rash, itchiness, nausea, or joint pain. Always fatigue and a feeling my body was 20 years older than it is. My provider assured me the side effects are treatable and I was on low dose prednisone 3x. After my last infusion 4 months ago, I developed diarrhea and currently need to take Imodium prn to bulk up the stool.

              Through the whole ordeal, I looked normal and acquaintances did not know I have cancer. I have my people I talk to about it and further discussion with other people seemed draining and non-productive. Today, 4 months after my last infusion, the joint pain has decreased to a 2/10 and I feel stronger every day.

              I dare say I felt quite old and arthritic on Keytruda, not really the ideal I pictured for myself at age 66 and newly retired, but now as Keytruda clears my system, I feel good and very glad to live cancer free!

              Good luck, and post as you need to for support!
              Cindy K (11 months NED)!

              Kimbo
              Participant
                Thank you, Cindy!

                This also is very helpful and encouraging!

                Thank you for taking the time!

                Kim

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