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Anyone stopped Keytruda due to side effects?
My oncologist sited a UK study that shows a difference in mortality rate of patients who took Keytruda and those who did not was between 5% and 6%.
I have not searched for that study. I’d like to know if this was a valid study, strictly monitored.
I ask this because in my case I had a severe adverse reaction to my first dose of Keytruda and am considering suspending further infusions.
My oncologist said all immunology drugs would have similar side effects.
This cancer experience of mine is overshadowed by arthritis.
I’ve posted here before with more details.
Just wondering if further infusions are worth the side effects with only a 5-6% difference?
Has anyone else on here made a decision to stop infusions and what was the outcome/experience?
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@mah7925 Yes. First infusion was AC chemo by itself. The next infusion Keytruda was added. Then in my recollection (which may be wrong given my memory during treatment) is that during my third infusion it was AC and Keytruda, then the coma in about a week. My oncologist thinks it was only one infusion with AC and Keytruda.
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1 Reaction@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.
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1 Reaction@rosback
Yikes! That is quite a severe side effect, to go into a coma. What body system was attacked by Keytruda to cause that to happen? Hope you are doing well now.
@beebe The pancreas. It killed the beta cells. Well, it caused my body to no longer recognize my own body cells and not attack them. Keytruda removes our immune system's safety. And my immune system attacked my pancreas and killed its ability to make insulin. My pancreas can not longer produce insulin. I had no idea what was going on. Without insulin your blood glucose increases. I started peeing every 1.5 hours instead of my usual 2 hours. I started vomiting like a fire hose. I hadn't vomited before them. I tripped. Then apparently I kept calling my sister. By that time my BG must have been really high. I thought the symptoms were from treatment, that I finally was getting more of them. Ketones were building up in my body. And I went into Diabetic Ketoacidosis (DKA) and since there was no intervention it got high enough for me to go into a coma. My blood glucose was 1107 at the ER I'm told. I've read this is what happens to most of the people who get become a Type 1 Diabetic from Keytruda. I think it is technically Type 3C, but that is up for debate apparently.
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1 Reaction@rosback how many Keytruda infusions did you have before the cited side effects?
@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.
@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.
@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.
@mah7925 Two.