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Keytruda side effects: How did you manage them?
62 year-old male, previously in good health and physically active until my world was turned upside down with a diagnosis of Stage 3b Clear Cell renal cell carcinoma in December of 2024. Complete right nephrectomy at the end of that month, now getting immunotherapy in hopes of preventing the cancer from returning or spreading.
3 weeks into Keytruda (I’m on 400mg every 6 weeks) and main side effects so far are joint pain, with tingling/slight numbness feeling in left hand fingers. Joint pain seems more centered in left hand and left knee - ironically my left wrist has been broken twice and my left knee has been operated on twice. I also have low back pain, where I’ve had herniated disks in the past.
Does anyone know if this correlates to the drug being most likely to affect areas where arthritis may have been starting? And does anyone who has experienced the pain and tingling/numbness in their hand(s) had it improve during immunotherapy, stay the same, or get worse?
I’m asking largely because I can’t work with the symptoms as they are (I need control for fine motor skills), but could return to work when the symptoms are gone. Thanks in advance for the replies.
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Am pleased to report that my husband had no negative reactions to his first Keytruda infusion. He slept well last night, drove us home, 165 miles, today. He did take one Claritin in the morning before his infusion at noon. Praying this continues and works!
So happy for you both!
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1 Reaction@mah7925
I am on Kertruda/Zometa infusion #6
It is tuff on bone-joint stiffness but Oncologist said works will keep going. It gets a little easier the more you take it. Take a bunch of Tylenol prior to infusion. Zometa is what causes the most pain. Take Tylenol regular and it helps a little. I took infusion on March 25,2025 and am sore all over. Lol
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2 ReactionsI had infusion #6 on March 25 and both of my wrists are sore. The Zometa is never the same. Take Tylenol it helps some.
@wildbill1942 still deciding on whether I continue keytruda second infusion.
I have ct scan coming up which will influence my decision. Thank you very much for your comment
As far as I know my 74 yr old husband has just had Keytruda. He did take one Claritan before his first infusion. The only side effect so far has been a little more tired than usual. He has his next infusion this week. Prayers for all.
Diarrhea started up after 6 mo. Had to take a CT to rule out colitis.
UPDATE: Managed to successfully make it through ALL 9 cycles of immunotherapy with Keytruda 400mg every 6 weeks. Ended up with a variety of side effects; some didn't appear until later into the treatment, while appeared early and became more intense over time. Thankfully, nothing became so overwhelming that I had to stop treatment.
Side effects that still exist include tingling/numbness in fingers and stiffness in finger/hands (which keep me out of work as a dentist), fatigue, joint pain - especially in my knees and to a lesser extent my left shoulder, bone pain - left hip, diarrhea (around cycle 5 or 6), nausea (cycle 7-9), and a bit of rain fog all along where I can't recall information as quickly as I used to. I also have the weird sensation of feeling like I have a wad of gum stuck to the bottom of my right foot, but of course there is nothing there.
While my pain levels are at 7/8 at times (most of the time it's 4/5), I refused to use any narcotics and stuck with two extra-strength Tylenol 3 times per day. I also use Lomotil to help with the diarrhea and Zofran for the nausea. It's definitely not a picnic, but the additional 7% this adds to my survival rate is truly worth the discomfort and inconvenience of having the Keytruda infusions.
My goal is someday to feel like I did before my diagnosis and treatment, but if I have to live with these side effects for the rest of my life, I will. Better than the alternative ...