Keytruda side effects

Posted by ebdent88 @ebdent88, Apr 16 9:22am

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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I am on Keytruda along with carboplatin and Taxol. After my first infusion I experienced aching from my knees on down at night while trying to sleep. Some people find relief from bone pain with Claritin and Pepcid AC. They are both histamine blockers. My second night I took Claritin and Pepcid before bed and had no pain or spasms. You might give it a try.
From the Keytruda I have experienced skin rashes and itching and have found it attacks the areas that had eczema as a child, so I think your supposition about Keytruda attacking areas that had previous inflammation may very well be correct.
Are you using the cold mittens and gloves during chemo to help prevent neuropathy? My oncologist also recommended 10mg L-glutamine/day and 100mg of Vitamin B6 (Pyridoxal phosphate, 5-P-5 form) to prevent neuropathy. If you do acupuncture for neuropathy I have read that the treatments should be weekly.
Do you think your treatment every 6 weeks could cause more side effects since it would be a higher dose than if administered every 3 weeks? I have wondered about that but not read anything to confirm my suspicions.
Hang in there!

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Thanks for the reply. I tried Claritin for about 2 weeks, but there was no noticeable difference, so I stopped taking it. A lot of joint stiffness, so it’s what I’d call tolerable rather than painful - the main thing is it keeps me from working as a dentist. Need that fine motor skill to hold the instruments, and hoping it will return soon, or if not during treatment, then after I’m finished with it.

I’m doing immunotherapy rather than chemo, but I also wondered about the every 3 weeks at half the dosage vs. the way I’m getting it. Both oncologists I consulted recommended the same course of treatment, so it wasn’t like either one suggested anything else. I’ll ask at my next infusion appointment.

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Has anyone done immunotherapy. With optiva and what was the outcome

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I had radical nephrectomy last year. I have tons of arthritis. I went on keytruda every six weeks for 8 sessions when they stopped the infusions. No sign of cancer. My only side effect from infusions was I got very tired for about two weeks after the first few infusions. Then it went away. I never had joint pain and I can tell you I have arthritis in my knees, shoulders and especially back. But everyone is different so just keep monitoring your pain and keep doctors well informed of all your symptoms. They should know what to do. Good luck my fellow afflicted friend.

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@ebdent88

Thanks for the reply. I tried Claritin for about 2 weeks, but there was no noticeable difference, so I stopped taking it. A lot of joint stiffness, so it’s what I’d call tolerable rather than painful - the main thing is it keeps me from working as a dentist. Need that fine motor skill to hold the instruments, and hoping it will return soon, or if not during treatment, then after I’m finished with it.

I’m doing immunotherapy rather than chemo, but I also wondered about the every 3 weeks at half the dosage vs. the way I’m getting it. Both oncologists I consulted recommended the same course of treatment, so it wasn’t like either one suggested anything else. I’ll ask at my next infusion appointment.

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Did you try Claritin with Pepcid (famotidine)? I think you need to take them together. Claritin is a H1 histamine disruptor and Famotidine is a H2 disrupter, so they work together to relieve aches. That combo is supposed to be great for bone pain.

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@oceanm1

I had radical nephrectomy last year. I have tons of arthritis. I went on keytruda every six weeks for 8 sessions when they stopped the infusions. No sign of cancer. My only side effect from infusions was I got very tired for about two weeks after the first few infusions. Then it went away. I never had joint pain and I can tell you I have arthritis in my knees, shoulders and especially back. But everyone is different so just keep monitoring your pain and keep doctors well informed of all your symptoms. They should know what to do. Good luck my fellow afflicted friend.

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Thanks for the response and good wishes!

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@beebe

Did you try Claritin with Pepcid (famotidine)? I think you need to take them together. Claritin is a H1 histamine disruptor and Famotidine is a H2 disrupter, so they work together to relieve aches. That combo is supposed to be great for bone pain.

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I have not, but will mention that to my oncologist. Appreciate the response.

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@famcare

Has anyone done immunotherapy. With optiva and what was the outcome

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My husband had 14 infusions of nivolumab over the course of about 18 months. It was very successful in taking out most of the RCC

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