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Anyone stopped Keytruda due to side effects?

Kidney Cancer | Last Active: Jul 19 9:06am | Replies (43)

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Profile picture for beebe @beebe

@wjhii It puzzles me also why Keytruda is so overwhelmingly recommended when there are side effects. I have no markers for which it has proven to be effective on. For people like me the benefit ranges from zero to 10% but as you know there are side effects that can be de-habilitating.
Why don't they run tests for immune disease markers before they prescribe it? If you have a gene defect that could lead to an autoimmune disorder and no genetic markers that Keytruda works on why prescribe it? My answer is because they feel helpless and do not realize that a lot of great benefits can come from changing your diet and exercising and sauna and social activities, and discontinuing all alcohol consumption (a toughie I know)!
I got the lung nodules from it which thankfully resolved, the rashes, and the start of psoriasis which fortunately went away with a diet change and discontinuation of the drug. The pulmonary specialist I saw for the lung nodule said her group on pulmonary oncologists were thinking that keytruda is being overprescribed.
Give yourself time and try to focus on what you can do.
Best of luck in your path forward

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Replies to "@wjhii It puzzles me also why Keytruda is so overwhelmingly recommended when there are side effects...."

@beebe The half life of keytruda is about 25 days. When was you last infusion? And the first two?

@beebe Keytruda kept my stage 4 lung cancer shrunk and quiet for nearly five years. When it started growing again I went back on Keytruda but got a very bad all over rash, so as the test showed my tumors were again shrinking, it was discontinued after a year, again in hopes that I would have as good a run as the previous time of nearly five years, but nine months afterwards cancer appeared in a couple of lymph nodes so back I went on Keytruda for five months, this time had ferocious diarrhea - which I still have even two months after the Keytruda was stopped because once more the tests looked good. No recurrence of the rash though. My oncologists say there was no knowing what or if the side effects might be if any, but that Keytruda is the gold standard. If anything life threatening happens they try something else but generally Keytruda is considered the first choice.

@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.