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?

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

I have been taking Keytruda infusions for about 20 months for a total of 18 infusions. I am 83 and my kidney cancer was diagnosed in March of 2023. I opted out of total nephrectomy and my only treatment has been the Keytuda. My next infusion is scheduled for next week and will be the 19th. I have suffered from severe skin rash from the Keytruda , but oncologist wants to keep my on it indefinitely, but I think this next will be my last at least for the next several months. So far I have been able to do all of the normal things of daily living, and last ct scan showed no spread of cancer and shrinkage of kidney lesion.

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My urologist didn’t suggest passing on the removal and just using immunotherapy. Maybe the tumor was too large. My cancerous kidney weighed 4 pounds!

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I had a severe reaction to Keytruda. It triggered Stevens- Johnson Sydrome that almost led to my death.
I live in Southeast England where the public health people that treated me as a 3rd degree burns sufferer brilliantly well did not have local expertise.
My skin was bleeding though layers of paraffin gel and organic mesh and two layers of clothes.
If there is anyone out there that I could share my and their experience with I would be greatful.

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Profile picture for billhopkins999 @billhopkins999

I had a severe reaction to Keytruda. It triggered Stevens- Johnson Sydrome that almost led to my death.
I live in Southeast England where the public health people that treated me as a 3rd degree burns sufferer brilliantly well did not have local expertise.
My skin was bleeding though layers of paraffin gel and organic mesh and two layers of clothes.
If there is anyone out there that I could share my and their experience with I would be greatful.

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@billhopkins999 perhaps the moderator of this group can help? I wish you well.

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This post is months old, but I'm posting for future readers. Soon after my second Keytruda infusion I went into a coma. I had been violently vomiting. I was on my third chemo infusion and hadn't vomited before. Living alone. My neighbor found me. I had DKA with coma. I was not diabetic before. So Keytruda caused my immune system to attack my pancreas, and I am now a Type 1 Diabetic, life-long serious side effect number 1. I continued chemo. 2 months after the end of chemo, I didn't feel right and went to my primary care doctor. My blood pressure was 60/50 standing and the diastolic was not readable sitting. I was diagnosed with Secondary Adrenal Insufficiency, serious side effect number 2. My pituitary was attacked and damaged. It had happened 6 months before when the pancreas Keytruda attack had happened. Life-long. I almost died twice. And while my condition was puzzling to the oncologist, it was chalked up to chemo. The steroids I got during infusion masked the secondary Adrenal Insufficiency. Keytruda had been stopped after the second infusion. In hindsight I didn't feel right after the first chemo and Keytruda infusion. Keytruda cites 2% chance of this happening and someone has to be in the 2%, but endocrinologist tell me the percentage is actually higher. 5%. And one told me higher than 5%. Hearsay on my part. I understand research is trying to reduce these serious side effects. I did have a pathologic complete response of the cancer, breast cancer.

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Thank you for posting. To be clear, you had chemo AND immunotherapy (keytruda)?

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Profile picture for billhopkins999 @billhopkins999

I had a severe reaction to Keytruda. It triggered Stevens- Johnson Sydrome that almost led to my death.
I live in Southeast England where the public health people that treated me as a 3rd degree burns sufferer brilliantly well did not have local expertise.
My skin was bleeding though layers of paraffin gel and organic mesh and two layers of clothes.
If there is anyone out there that I could share my and their experience with I would be greatful.

Jump to this post

@billhopkins999, that is rough. You may wish to share in these related discussions:
- Stevens-Johnson syndrome caused by immunotherapy trial https://connect.mayoclinic.org/discussion/steven-johnson-syndrome-caused-by-immunotherapy-trial/

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