Anyone stopped Keytruda due to side effects?

Posted by mah7925 @mah7925, Nov 12, 2025

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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@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.

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@sandie8860 following

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@rosback what I find interesting is that everyone responds to Keytruda differently enough to wonder if this is science or just quack science with a rush to market because of a few positive results.

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@mah7925
Keytruda is effective for some cancers and for others the results are not so great. For endometrial cancer the overall survival difference for non PDL-1 cancer is only 6 months between the group that got Keytruda and the group that did not. To me that is a low efficacy for that cancer as it is not a cure and only prolongs survival with the added danger of side effects occurring.
I feel like they massage the data to come up with the greatest sounding benefits and downplay any potential negative side effects. I see for kidney cancer after 4 years the survival rate is 6% higher for those who are on Keytruda vs no treatment after surgery, (91% vs 86%), but that 21% of those getting treatment had to drop out due to side effects. That seems like a high rate of side effects to me. Hopefully someone will come up with a drug that does not over activate the immune system so severely.

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Profile picture for beebe @beebe

@mah7925
Keytruda is effective for some cancers and for others the results are not so great. For endometrial cancer the overall survival difference for non PDL-1 cancer is only 6 months between the group that got Keytruda and the group that did not. To me that is a low efficacy for that cancer as it is not a cure and only prolongs survival with the added danger of side effects occurring.
I feel like they massage the data to come up with the greatest sounding benefits and downplay any potential negative side effects. I see for kidney cancer after 4 years the survival rate is 6% higher for those who are on Keytruda vs no treatment after surgery, (91% vs 86%), but that 21% of those getting treatment had to drop out due to side effects. That seems like a high rate of side effects to me. Hopefully someone will come up with a drug that does not over activate the immune system so severely.

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@beebe agree. My scan on July 10 will tell the tale. I’m on Cabometyx and Opdivo since I could not tolerate keytruda after only one infusion

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Profile picture for mah7925 @mah7925

@beebe agree. My scan on July 10 will tell the tale. I’m on Cabometyx and Opdivo since I could not tolerate keytruda after only one infusion

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@mah7925
I am glad there was an alternative to Keytruda for you. Wouldn't it be great if there was a central data center that tracked side effects from different chemo infusions and correlated that to genetic profiles? It may be that all of the patients who suffer side effects from Keytruda have autoimmune disorders already or genetic markers that predispose them to an autoimmune condition. Sending you prayers for a clear scan and peace while you wait for results.

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I was diagnosed in Jan of 2021 with Stage 4 kidney cancer. It had Matatastized to my lymph nodes and my lungs. I had a severe allergic reaction to Opidvo so I was put on Keytruda. I did 2 yrs of Keytruda. It didnt remove my cancer but it did keep it contained. I had some side effects to keytruda but not so severe that I couldnt have a fairly normal life. Ive had 2 surgeries after they removed my kidney, to remove lymph nodes. Im now clear on that and only dealing with the small spots of cancer in my lungs. Ive tried everolymus combined with Lenvantinib which isn't really doing much. And I tried welireg but that drop my lung function/oxygen levels drastically with in 10 days of being on it so I was taken off that. Ive now been referred to the Mayo Clinic in Phoenix and am trying to get into a new fda trial drug there. Fingers crossed that I qualify and that this drug does the trick. Stay positive. Like my Oncologist explained , theyre approving new drugs every year. Ive continued to work through all of this and come to terms with my new life. Im making the best of each day and I believe in technology and I trust my Dr's. But I know what works for one person doesnt always for someone else since we are all unique individuals. Have faith, stay informed and do your best to stay strong despite the challenges of being in treatment.

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Thank you for sharing. I hope your treatments are successful and I agree, be informed and your own advocate.
Mert

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