Hello,
Posting on behalf of a family member. Diagnosed with RCC in summer, had a radical nephrectomy and on adjuvant immunotherapy - taking Pembrozulimab.
Started on immunotherapy in September, at this time kidney function (eGRF) was around 58, quite a big improvement from post-surgery. About four weeks after the first cycle of treatment this number fell to 40 and creatinine was about 156.
Really concerned as have been trying to speak to someone about this but no one seems concerned even though it feels like a significant decline? Spoke to a doctor late on Friday who said it isn't ideal but would be monitored and wouldn't be a reason to pause treatment.
But given the fact this huge drop has come after one cycle of Pembro very concerned about the next one which is due to take place later this week.
Has anyone been in a similar situation re kidney function dropping this much because of Pembro? Really keen to know if it's a temporary side effect. And trying to work out if I should be going ahead with the second cycle this week or not?
Thank you.
I had kidney function dropping after I started ipilimumab and nivolumab. See my blog of that time -> Acute Interstitial Nephritis - May 2022 plus a few posts after that period until I got back on my treatment schedule.
It was caused by too good a reaction to ipilimumab. Immunotherapy causes inflamation which helps the body fight the cancer. I had too much which blocked the tubules in the kidney causing creatinine to rise and eGFR to fall. Mine got down to 30s at which point the onco started phoning me to find out if I had started the steroids he'd prescribed yet.
Just posted the same in the thread on this forum "high creatinine levels causing sweats".
My treatment was stopped the day before when my eGFR was too low. I think it was in the high 30s range then, creatinine 160. There's a graph on my blog where I watched it intricately, urging the creatinine down, so I could get the drugs to sort the cancer!
It's a side effect of the immunotherapy but I doubt it will improve on it's own. Steroids normally, and a break from the pembro. Then they will assess whether it's safe to restart immunotherapy or not.
There's a lot of unknowns with the side effects of immunotherapy as the medical knowledge and experience hasn't kept pace with their adoption.
My eGFR is now 50, which is rubbish for my age. It won't improve now.
How are you now? Did your kidney function ever get back to normal? I ask because I was on ipi/nivo for only two months, but my kidney function became irregular six weeks after starting ipi/nivo and is still getting worse. Four weeks after I stopped ipi/nivo (wasn't helping my cancer anyway), my eGFR is 33 and my creatinine is 1.67. They put me on 20 mg prednisone for four days (pharmacy error), then 60 mg prednisone the last two days. Kidney scan tomorrow. Wondering if this will get better or worse.
Hi
My kidney function never returned to normal. My eGFR is about 53 which is poor for someone my age (57). But I don't feel any ill effects from my pants kidney function.
I stopped treatment in June 2024. I've been very fortunate with how my body responded to the treatment and I am classed as a good responder.
Thank you for getting back to me so quickly. I'm glad the immunotherapy worked for you. I'm hoping the prednisone will return my kidney functions to (close to) normal. I'm in San Francisco and getting very good care from the University of California at San Francisco Medical Center. I have a rare cancer: neuroendocrine carcinoma and acinar cell carcinoma. I've had two major surgeries and been on five types of chemo, but strangely enough I'm mostly asymptomatic, even from the treatments. I'm just happy to wake up each morning and feel good. Thanks again for your response. -Jeanie
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