Keytruda causing eye side effects

Hello Annalena - this very side effect is happening to me now. I have Stage 4 endometrial cancer (lung metastasis). I had total hysterectomy w/ BSO in Jan 2024 and started chemo (Taxol & Carboplatin) plus Keytruda in early Feb 2024. I just had my 3d infusion round this past Monday. On Wednesday I was driving and noticed blurry street signs and explosions of light reflecting off oncoming cars. On Thursday morning I went outside and the rising sun occupied the entire sky. I got an emergency appt with my ophthalmologist that day. He reassured me and diagnosed it as uveitis. He prescribed (topical) steroid eyedrops to be taken daily for the next month. Until my eyes get better when I go outside in daytime I wear a golf visor and very dark sunglasses. I see my oncologist tomorrow to check and make sure this approach is good from his perspective. Here's hoping we both have improved eyesight soon.

Thanks @blanchette for sharing your experience! Today is 32 days since the symptoms began...When the side effects happened, I immediately made an appointment to see my ophthalmologist & she could find nothing wrong from the exam. The good news is that over the last week, my eye sight has improved! I have been treating it as severe dry eye. A great resource has been Dr Joseph Allen on YouTube: https://www.youtube.com/@DoctorEyeHealth Thanks to him, I have started using warm eye compresses, eyelid massages, night gels, and taking the supplements fish oil & lutein which have all been helping heal my eyes, though slowly. His video on 'Dry Eye Can Ruin Your Life' - https://www.youtube.com/watch?v=BJ-KDNdNykY - confirmed that my symptoms - blurred vision, sun sensitivity, & eye fatigue - can all be a result of severe dry eye. Please let us know what your oncologist says @blanchette.

@annalena Hi again. I saw oncologist yesterday, who seemed more concerned about uveitis than eye doc. Oncologist said I must see eye doc again in 2 weeks. I will not be cleared for future infusions until eye doc can certify that my vision (and uveitis) has improved substantially. I'm actually hoping to get a week or 2 extra break from infusions. I deal with side effects, but would like a few more days of feeling normal. The joint pain and muscle aches are really limiting, tho I can deal with worst of them via the wonders of modern pharma. I'm just so tired of cancer. I recently found this group and am truly happy to find a community where I can talk about this. You are my first post! thank you.

And this was my first post @blanchette ! I am also taking a break from infusions With my eye sight being so bad -- blurred vision, sensitivity to sun, & eye fatigue -- and still no diagnoses as to what it is or answers as to whether it would keep happening, I just could not keep going with infusions at this time. I need for my eye sight to get better before I return to having infusions. I just wish I knew for sure that it is severe dry eye. The article below is one of the few I've found on this issue and it does mention dry eye as one of the conditions.
https://www.michiganmedicine.org/health-lab/ophthalmologists-link-immunotherapy-serious-eye-condition

Has anyone getting Keytruda infusions noticed an increase in your CA125? Mine has gone up and my Onc said its common with the first 3 infusions.

Thanks for that link, @annalena, Yesterday I had appt at our localish comprehensive cancer center. Revised treatment plan is I will keep my next (4th) chemo infusion schedule, but without any immunotherapy agent (i.e., Keytruda). I am interested to see how I will feel after infusion with only chemo and no Keytruda. My 5th and 6th (last?) infusions will include a different immunotherapy agent: dostarlimab. Let's hope that's the ticket! Wishing you the very best in your rapid vision recovery.

I'm on Keytruda 6-week infusions for a recurrence I sometimes experience a bit of blurry vision told to use drops for dry eyes. I have another question have you seen an increase in your CA125 after starting Keytruda?

Hi @tbkomparda - I'm sorry I can't answer your question. The day I started chemo/Keytruda my CA125 was 9.5. Because that level is pretty low, I've never bothered to ask about it since. In fact, all my blood counts have been very good thru-out infusions.

It seems so weird to me that technically I am darn sick (multiple lung metastases), yet weeks 2 and 3 of my chemo cycle I feel like a normal healthy human being. Cancer is a strange beast.

Thank you. A very strange beast indeed

Yes, I was on Keytruda and my ca-125 jumped a couple hundred points then went down.
This also happened when I was on carboplatin, taxol 4 years ago. The oncologist never told me my 125 could go up, let alone several hundred points before starting to fall.
It scared the heck out of me!!!!