Keytruda causing eye side effects

Posted by annalena @annalena, Mar 22, 2024

I was diagnosed with stage 1 endometrial cancer in January 2022. I had chemo with Taxol and Carboplatin from October 2022 to February 2023. This was followed by radiation from May - June 2023. Though the lymph nodes were clear, the vaginal tumor was still active, so I began immunotherapy with Keytruda every 3 weeks in January 2024. I have had the "rare but serious side effect" of vision changes occur after the 2nd treatment & grow worse after my 3rd treatment - blurred vision and sun sensitivity. I declined the 4th until my eyes recover. I was told to moisturize my eyes and change the type of eye drop I was using to have more hydration. It is helping somewhat, and I understand that eyes are slow to heal, but it seems to be taking forever. It has now been 5 weeks of not being able to see well. On the other side of things, the scan I just had shows "positive results". Has anyone else experienced eye issues with Keytruda? If so, did they ever get better? If so, what did you do to help your eyes heal? Thank you

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Hi @fighter2025 ,

My eyes are good. I still have some issues with dryness, but I use eye drops on a daily basis, which really helps. And every 3 nights or so, I use a heated eye mask (https://dryeyerescue.com/) for 10-15 minutes followed by a night gel. And I am religious about wearing wraparound sunglasses. When my eyes were really bad, I did skip two immunotherapy treatments since they could not promise me that they would not get worse.

I had cataract surgery after chemo and before immunotherapy. (When I had chemo, the keytruda immunotherapy was not yet approved.)

In May 2024, once my eyes had started to improve, I went back for two more treatments (I had 5 total treatments - 3 in January-February 2024 after which the eye side effects appeared; 2 in May 2024). After those, my body had a inflammation response that caused them to completely stop treatments. I was prescribed steroids, which made me feel better, but after 3 months they wanted me off of them, and that's when the neuropathy appeared in my hands. It was one of the most painful things I have ever been through, but it was worth it in the end. However, the great news is that the June 2024 scan found me to be cancer free & I remain so as of my last scan in January.

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@annalena

Hi @fighter2025 ,

My eyes are good. I still have some issues with dryness, but I use eye drops on a daily basis, which really helps. And every 3 nights or so, I use a heated eye mask (https://dryeyerescue.com/) for 10-15 minutes followed by a night gel. And I am religious about wearing wraparound sunglasses. When my eyes were really bad, I did skip two immunotherapy treatments since they could not promise me that they would not get worse.

I had cataract surgery after chemo and before immunotherapy. (When I had chemo, the keytruda immunotherapy was not yet approved.)

In May 2024, once my eyes had started to improve, I went back for two more treatments (I had 5 total treatments - 3 in January-February 2024 after which the eye side effects appeared; 2 in May 2024). After those, my body had a inflammation response that caused them to completely stop treatments. I was prescribed steroids, which made me feel better, but after 3 months they wanted me off of them, and that's when the neuropathy appeared in my hands. It was one of the most painful things I have ever been through, but it was worth it in the end. However, the great news is that the June 2024 scan found me to be cancer free & I remain so as of my last scan in January.

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Oh, I am so thrilled to hear your No Cancer diagnosis. outcome. Looks like your Keytruda was at 3 weeks interval. So, that is total of 200mg x 5 treatments. This is totally awesome.
May I ask the how many or the size of nodules you had? Did Chemo helped shrinking any at all or all the improvement was after Keytruda?
May I ask which mask and night gel did you buy?

I am hoping to achieve the same NED status but seem far away from it as tons of Chemo & Immunotherapy side effects are being faced. Besides neuropathy, the eye impact is the biggest and not sure what the resolution is. Eyes are so blurry, irritating and light sensitive. Hoping and praying for God's Blessings and Miracle to help me out here.

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Hi @fighter2025,

By the time I started immunotherapy, I had already had chemotherapy & radiation that took care of the cancer in the lymph nodes. But, I had a tumor remaining in my lower vagina that the radiation had not resolved, but the immunotherapy did.

Eye Masks: My fav to use at night: https://dryeyerescue.com/products/eyecloud-home-treatment-kit-moist-heat-treatments-600-gel-pack-uses-blue
I also have this one, and used it a lot while healing (I did eye masks about 3 times a day, while healing), but not so much anymore because it has to be heated up in the microwave: https://dryeyerescue.com/products/bruder-mask
When traveling, I use these: https://dryeyerescue.com/products/eyedration-air-activated-steam-mask-20ct
Night gel after eye mask: https://dryeyerescue.com/products/soothe-eye-ointment-by-bausch-lomb-lubricant-relief-for-dry-eyes-nighttime-dry-eye-therapy-sensitive-eyes-preservative-free-1-8-oz-tube

It took a long time to heal, but it did get better. Stay positive!

REPLY
@annalena

Hi @fighter2025,

By the time I started immunotherapy, I had already had chemotherapy & radiation that took care of the cancer in the lymph nodes. But, I had a tumor remaining in my lower vagina that the radiation had not resolved, but the immunotherapy did.

Eye Masks: My fav to use at night: https://dryeyerescue.com/products/eyecloud-home-treatment-kit-moist-heat-treatments-600-gel-pack-uses-blue
I also have this one, and used it a lot while healing (I did eye masks about 3 times a day, while healing), but not so much anymore because it has to be heated up in the microwave: https://dryeyerescue.com/products/bruder-mask
When traveling, I use these: https://dryeyerescue.com/products/eyedration-air-activated-steam-mask-20ct
Night gel after eye mask: https://dryeyerescue.com/products/soothe-eye-ointment-by-bausch-lomb-lubricant-relief-for-dry-eyes-nighttime-dry-eye-therapy-sensitive-eyes-preservative-free-1-8-oz-tube

It took a long time to heal, but it did get better. Stay positive!

Jump to this post

Super helpful. Thank you so much for filling me in on your journey to healing.
I will order few of these to start with. I was also looking at electric heat eye mask on Amazon, thinking perhaps it will maintain heat consistency for longer time.

Hoping & praying for quick turn around on healing.

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