Are you able to manage the side effects of Keytruda? Tips?

Posted by kat3110 @kat3110, Nov 5 11:08am

I’ve been on chemo and immunotherapy with Keytruda for my initial cancer treatment. I’m now moving to maintenance mode and my doctor is recommending staying on Keytruda. My concern is the side effects are pretty difficult to live with for me. I have to get up and change my nightgown and or my bedsheets two to three times a night because I sweat until I’m drenched. My arthritis which I had under control before my cancer is screaming at me. And I’m nauseous with no appetite all the time with no relief from anti nausea medication. Has anyone found Keytruda to be something you can live with long-term and that was dosage levels worked for you?

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Hi Kat,
I'm sorry that you are having such bad side effects from Keytruda! My husband had lung cancer and had Keytruda which almost killed him! One of the side effects of Keytruda is Pancreatitis which he got and was so sick he almost died. He insisted on no more Keytruda treatments which angered the cancer doctor to the point that she wouldn't even see him. She was probably unhappy because the Keytryda cost $25,000 per infusion and that would be stopping. Instead we went to our primary care doctor and he referred my husband to a specialist who was able to cure my husband of the Pancreatitis. My husband only had Keytruda treatments for about 2 months. I don't think he could have survived them any longer. He quit all treatments of any kind. and we just said our prayers and ate healthy. He did go to another more reasonable cancer doctor. My husband lived for 14 years with lung cancer. He died in 2024.

I would suggest you do some research on the side effects of Keytruda. Then you can make an informed decision about what to do. Everyone is different and reacts differently to medications. The Mayo Clinic website is a good place to do the research. They are reliable.

I would also suggest you just give your problems up to God. After all, he made you and he can fix you! I'll say a prayer for you too.

I wish you the best.
PML

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Profile picture for pml @pml

Hi Kat,
I'm sorry that you are having such bad side effects from Keytruda! My husband had lung cancer and had Keytruda which almost killed him! One of the side effects of Keytruda is Pancreatitis which he got and was so sick he almost died. He insisted on no more Keytruda treatments which angered the cancer doctor to the point that she wouldn't even see him. She was probably unhappy because the Keytryda cost $25,000 per infusion and that would be stopping. Instead we went to our primary care doctor and he referred my husband to a specialist who was able to cure my husband of the Pancreatitis. My husband only had Keytruda treatments for about 2 months. I don't think he could have survived them any longer. He quit all treatments of any kind. and we just said our prayers and ate healthy. He did go to another more reasonable cancer doctor. My husband lived for 14 years with lung cancer. He died in 2024.

I would suggest you do some research on the side effects of Keytruda. Then you can make an informed decision about what to do. Everyone is different and reacts differently to medications. The Mayo Clinic website is a good place to do the research. They are reliable.

I would also suggest you just give your problems up to God. After all, he made you and he can fix you! I'll say a prayer for you too.

I wish you the best.
PML

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@pml
Thank you for the feedback. I’ve not heard one good thing about Keytruda but my sister will be angry if I don’t continue with it. She is a scientist/geneticist and very much believes in it. So I agreed to reconsider after we got the latest imaging to see what state my cancer is in after these first 4 rounds of chemo/keytruda. Perhaps a much lower dosage with breaks would work.

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Profile picture for kat3110 @kat3110

@pml
Thank you for the feedback. I’ve not heard one good thing about Keytruda but my sister will be angry if I don’t continue with it. She is a scientist/geneticist and very much believes in it. So I agreed to reconsider after we got the latest imaging to see what state my cancer is in after these first 4 rounds of chemo/keytruda. Perhaps a much lower dosage with breaks would work.

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@kat3110
The lower dosage with breaks might be a good thing to try. However, if it doesn't work just remember it's your body, not your sister's. Do what you feel is best for you. I'm sure your sister means well and feels she has your best interests at heart but only you know how you actually feel.
I'll say a prayer for you.
PML

REPLY
Profile picture for kat3110 @kat3110

@pml
Thank you for the feedback. I’ve not heard one good thing about Keytruda but my sister will be angry if I don’t continue with it. She is a scientist/geneticist and very much believes in it. So I agreed to reconsider after we got the latest imaging to see what state my cancer is in after these first 4 rounds of chemo/keytruda. Perhaps a much lower dosage with breaks would work.

Jump to this post

@kat
I have been on Keytruda for 5 years, thankfully I have not had any side effects except for fatigue it has kept my cancer at bay.

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Profile picture for pml @pml

Hi Kat,
I'm sorry that you are having such bad side effects from Keytruda! My husband had lung cancer and had Keytruda which almost killed him! One of the side effects of Keytruda is Pancreatitis which he got and was so sick he almost died. He insisted on no more Keytruda treatments which angered the cancer doctor to the point that she wouldn't even see him. She was probably unhappy because the Keytryda cost $25,000 per infusion and that would be stopping. Instead we went to our primary care doctor and he referred my husband to a specialist who was able to cure my husband of the Pancreatitis. My husband only had Keytruda treatments for about 2 months. I don't think he could have survived them any longer. He quit all treatments of any kind. and we just said our prayers and ate healthy. He did go to another more reasonable cancer doctor. My husband lived for 14 years with lung cancer. He died in 2024.

I would suggest you do some research on the side effects of Keytruda. Then you can make an informed decision about what to do. Everyone is different and reacts differently to medications. The Mayo Clinic website is a good place to do the research. They are reliable.

I would also suggest you just give your problems up to God. After all, he made you and he can fix you! I'll say a prayer for you too.

I wish you the best.
PML

Jump to this post

@pml
I am so sorry for your loss, Iam 61 years old have been on keytruda for 5 years for lung cancer, thankfully no real side effects except fatigue, there is no cure for my cancer but this has been a god send for me, it does effect ppl differently and it has saved many lives.

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I have been on keytruda for 5 years for lung cancer, with side effect of fatigue thus far. For me it has been a god send. Are you still having chemo can cause sweating to or menopause induced by chemo. I hope all works out for you and you can stay on keytruda it has saved many lives, including mine.

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Welcome @kat3110, there are people that tolerate immunotherapy well, but you certainly have the hormone related side effects. I take an aromatize inhibitor (for a second cancer, breast) that’s giving me similar side effects, and I can relate, it’s a real struggle and can be exhausting.
The immunotherapies and targeted therapies are widely credited with improving the lung cancer survival rates in recent years. But you need to find something that works for you. Please have a frank discussion with your doctor, you are thinking of stopping, is there anything else we can try, such as a lower dose, or would one of the hot flash meds be effective? I don’t have the answer, but your doc should have some ideas. Sometimes a primary care doc can have some good insight on treating side effects too, another set of eyes on the issue isn’t a bad idea. Can you let us know how it goes?

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