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Anyone stopped Keytruda due to side effects?

Kidney Cancer | Last Active: 38 minutes ago | Replies (31)

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Profile picture for beebe @beebe

@rosback
Well that really sucks. It seems like it would be a good idea for patients on a Keytruda regime to be asked to test their blood sugar with a home glucose test at least once a week so you would be aware if a problem was occurring. At a minimum we should be educated on the side effects that need to be reported immediately.
Did you get blood labs every 3weeks while on Keytruda? It seems like something should have showed up in your labs before you hit the wall and ended up in a coma.

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Replies to "@rosback Well that really sucks. It seems like it would be a good idea for patients..."

@beebe Yes, a routine which could be recommended by the oncologist would be a great idea. My research says when it happens, it happens quickly. So daily or twice daily checks are best. My sister and I discussed this. We recommend two things for the T1D. Like you said testing your blood glucose with a finger stick, these test kits are available in the grocery store. Or if that test is too intimidating, test your ketones. That requires peeing on a test strip. These kits are also available at the grocery store. But to do this daily. Or twice daily even. And for the Adrenal Insufficiency to take your blood pressure every day. I did notice that my blood pressure went down. This change was gradual. I caught that when I felt bad but was not too far gone to just be trying to essentially survive. And my oncologist said to stop my blood pressure meds. After a while I just slept most of the day and looking back had trouble thinking and standing for more than a minute. But if I had been told to do these checks daily I would have followed it. Also, I was losing a lot of weight so that could explain the drop in BP. So the oncologist seemed confused about my symptoms. They weren't what she usually saw. I've got to say, watching YouTube videos from people going through treatment confused me, they were able to do regular activities and I couldn't. I felt a bit like a failure. But it makes sense now.