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Anyone stopped Keytruda due to side effects?

Kidney Cancer | Last Active: 2 hours ago | Replies (29)

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Profile picture for wjhii @wjhii

@beebe I agree after what it did to me with no indication of any cance I had severe arthritis, muscle spasms lasting hours, lung nodules and then shortness of breath which turned out to be Drug-induced pneumonitis. I am now on high levels of prednisone and oxygen. Until Keytruda infusions I was able to do 180+ cardio exercises and lift weights. Now I need oxygen to go up and down stairs, lost 10 lbs. and all my muscle mass is gone. The Drug-induced pneumonitis started to show in a CT scan but they gave me a third treatment and everything went down hill. I stopped due to the arthritis and muscle spasms and then the breathing problems started 8 weeks after the last. This stuff at $130,000.00+/ treatment not for “just in case a small undetectable cancer cell is floating around.” No matter what they tell you. I wish I knew how common adverse side effects are. They told me “don’t worry the side effects are rare”. Turns out 40%+ class A side effects is the going rate.

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Replies to "@beebe I agree after what it did to me with no indication of any cance I..."

@wjhii
The problem with drugs is the side effects experienced by patients are probably not reported to a central data bank that updates side effect data for that drug. Doctors don't have time to bother, reporting adverse side effects should be a standard procedure. A 2020 study in JAMA found that fewer than 1% of adverse drug events in the U.S. are reported to the FDA. Your side effects should have been reported, it would be an interesting question to ask your Doctor. Sending you healing prayers.

@wjhii
I find your note regarding nodules interesting. I started Keytruda in Feb. in May CT showed nodules they believe to be Mets. They continued Keytruda and now the nodules have multiples in size and number. Headed for a biopsy soon. Your note gives me hope it is not metastasis.
Prayers and blessings.