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Do Keytruda side effects persist after treatment ends?

Forums General Melanoma Community Do Keytruda side effects persist after treatment ends?

  • Post
    betsyl
    Participant

      Hey, all,

      My husband is almost halfway through his planned six-month course of first-line Keytruda. 

      Now that he's had four infusions, he's really feeling the fatigue (and some joint pain) and is wondering if these effects will subside when treatment ends.

      If you are in the post-treatment phase, what has been your experience been with regard to persistent side effects?

      Thanks and best wishes!

       

      -Betsy

       

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    • Replies
        cancersnewnormal
        Participant

          Yes… and no. I stopped Keytruda after 29 infusions (20 months). I had long been clear of any lesions, but with that "we don't know when to stop" still circling around, the docs and I were shooting for 2 years. When I was hit with some minor pancreatitis and the joint pain became unbearable, we decided to "take a break for awhile". My last infusion was July 5, 2016. With the stop of infusions, the pancreatitis resolved on its own. My joint pain did not. Although my inflammatory markers dropped, and any lupus-like symptoms disappeared, my right side knee, hip, shoulder, neck, elbow, aaaaaand fingers… all continued to ache. I was referred to rheumatology and began sulfasalizine (500 mg x2 daily) in early Sept 2016. Within 4-5 weeks, the pain was significantly decreased, and in some of the joints, completely gone. Buuuuut… I'm still on the sulfasalazine. At my last appointment, we discussed how much longer I should remain on these pills. I'm not a fan of taking any kind of meds. I'd like to give my liver its best chance for long term good function. : )  The big question regarding stoppage, is how much damage was done before we got the inflammation under control? If your hubs is having continuous joint pain, the docs should probably take a look at any inflammatory markers in his blood labs, and possibly even consider x-rays of the joints. If it is the inflammation itself causing the pain, that can be brought under control prior to it causing more permanent damage within the joint. On the plus side…… the side effects can ease or disappear, but the immune system can continue to kick cancer's a**!  : )

            betsyl
            Participant

              Hi Niki,
              Thanks for your response. Sorry about the joint pain you've experienced, but glad the have a drug that's helping you. Do you get your blood checked regularly to monitor any potential liver damage?

              I'm wondering if the normal blood work done before each Keytruda infusion includes testing for inflammatory markers. I imagine yes, but I'm not sure. His bigger concern right now is the fatigue. The joint pain is relatively mild.

              Did you (and do you still) have Keytruda-incuded fatigue?

              Thanks,

              Betsy

              betsyl
              Participant

                * induced, not incuded 🙂

                cancersnewnormal
                Participant

                  Yes, the fatigue went away pretty quickly for me. The routine CMP and CBC tests will not cover inflammatory markers.They will give docs a peek at liver numbers though. I've always been fortunate to be "like a machine" in that regard. I still get labs once every 2 months, prior to any brain MRI's or body CT's. ESR and CRP are inflammatory tests that can be added to his next pre-keytruda draw. They will be elevated if there is any inflammation, but are pretty general. A good starting point though… particularly before the joints begin to show any swelling. My docs eventually tested me for RA markers (rheumatoid arthritis) as well as ANA (for lupus). Joint pain is a pretty "common" side effect, but can also develop into autoimmune induced arthralgias… so it's worth keeping note of that with his docs. : )

                Bubbles
                Participant

                  Hi Betsy,

                  I took Nivolumab/Opdivo (the "other" anti-PD-1 product with basically identical side effects and response rates as Keytruda/Pembrolizumab) for 2 1/2 years from Dec 2010 – June of 2013.  While on the treatment I certainly had plenty of fatigue, arthralgias, episodes of wheezing and pneumonitis, and significant mouth ulcers.  Since then, I gradually returned to "normal"….it took time…the arthralgias still come and go…the fatigue gradually diminished as did the frequent episodes of wheezing.  I do STILL have transient epidsodes of painful mouth ulcers and dry mouth…BUT…they are not nearly as bad as they were while on meds.  An additional plus, I am now 14 years post original melanoma diagnosis and 7 years post Stage IV with lung and brain mets….and remain NED.  I wish you and your husband my best.  Celeste

                    betsyl
                    Participant

                      Thanks, Celeste! You are amazing.

                       

                      -Betsy

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