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Any experience with Keytruda?

Head & Neck Cancer | Last Active: May 18 7:20pm | Replies (8)

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Profile picture for mrichey55 @mrichey55

I had urothelial cancer with spread to kidney. The kidney was removed with clean margins but my oncologist (not Mayo) suggested chemo followed by keytruda. The keytruda has been a nightmare for me. No issues until around the 5 month mark, then it gave me diabetes by triggering the immune system to attack and destroy insulin-producing pancreatic beta cells. By blocking the PD-1 protein, the drug removes "brakes" on T-cells, allowing them to attack cancer, but also causing them to mistakenly attack the pancreas. A month later, my eyes became extremely inflamed and swollen, the eye doctor said they're fine and gave me drops. At the same time I was beyond fatigued, couldn't get off the couch with fatigue. I ended up in the ER and admitted. They found that Keytruda had caused it and worried it had gotten to the back of the eye; it hadn't yet but I was in the hospital 5 days on 3i different antibiotic drips and home for 10 days and still blurry vision. While in the hopital imaging found that Keytruda had destroyed my adrenal gland so I was producing no coritsol, thus the extreme fatigue. I'm now on replacement coritsone for life.

I'm sure Keytruda has done a lot of good things for people, but I stopped after all this. Just beware that it can and does impact many things. Keep alert and best of luck.

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Replies to "I had urothelial cancer with spread to kidney. The kidney was removed with clean margins but..."

@mrichey55, your reaction to Keytruda sounds brutal. It must be such a betrayal to experience long-lasting side effects from a drug that was meant to help fight the cancer. Like you said, everyone is different. For some people, Keytruda is the right drug.

What treatment are you on now for urothelial cancer? Next steps?