1. < Gynecologic Cancers

Keytruda causing eye side effects

Posted by annalena @annalena, Mar 22 12:06pm

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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tbkomparda | @tbkomparda | Mar 31 3:00pm

It does care the heck out of you mine went up 30 points after the first one I freaked out just had the 2nd one this week I've been reading that it goes up the first 3 infusions then starts falling. Glad your Onc gave you warning mine didn't.

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1 reply
blanchette | @blanchette | Apr 17 6:03pm
In reply to @annalena "Thanks @blanchette for sharing your experience! Today is 32 days since the symptoms began...When the side..." + (show)
@annalena

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.

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Hi @annalena - (hope this isn't a double post; my previous effort seemed to disappear into a digital black hole...)

Update: my uveitis is resolved after 26 days of prednisolone (steroid) eye drops. I had my 4th chemo infusion (minus Keytruda) on schedule last week. And am scheduled to have 5th and then last infusion of chemo plus dostarlimab (instead of Keytruda) on time.

I have amazing news to share. I had my 1st CT scan since starting chemo, and I'm N.E.D. No sign of those 5 metastatic pulmonary nodules. It feels unreal, after almost 9 months of cancer dominating my life. I asked my oncologist if I could skip the last 2 infusions, and he said no, we needed to mop up any microscopic bad boys. Rats!

I hope your own eye problem is resolved and you are doing much better. I'll keep you posted on whether I have any eye inflammation with dostarlimab.

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2 replies
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Apr 17 6:58pm
In reply to @blanchette "Hi @annalena - (hope this isn't a double post; my previous effort seemed to disappear into..." + (show)
@blanchette

Hi @annalena - (hope this isn't a double post; my previous effort seemed to disappear into a digital black hole...)

Update: my uveitis is resolved after 26 days of prednisolone (steroid) eye drops. I had my 4th chemo infusion (minus Keytruda) on schedule last week. And am scheduled to have 5th and then last infusion of chemo plus dostarlimab (instead of Keytruda) on time.

I have amazing news to share. I had my 1st CT scan since starting chemo, and I'm N.E.D. No sign of those 5 metastatic pulmonary nodules. It feels unreal, after almost 9 months of cancer dominating my life. I asked my oncologist if I could skip the last 2 infusions, and he said no, we needed to mop up any microscopic bad boys. Rats!

I hope your own eye problem is resolved and you are doing much better. I'll keep you posted on whether I have any eye inflammation with dostarlimab.

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@blanchette Congratulations on your recent exam and N.E.D. and the clearing up of the eye blurriness problem. This is wonderful news and I'm so happy for you.

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Apr 17 7:00pm
In reply to @tbkomparda "It does care the heck out of you mine went up 30 points after the first..." + (show)
@tbkomparda

It does care the heck out of you mine went up 30 points after the first one I freaked out just had the 2nd one this week I've been reading that it goes up the first 3 infusions then starts falling. Glad your Onc gave you warning mine didn't.

Jump to this post

@tbkomparda Have you talked with your oncologist about your CA-125 numbers? I get really frightened when I see results that I didn't expect and don't understand.

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1 reply
tbkomparda | @tbkomparda | Apr 18 8:33am
In reply to @naturegirl5 "@tbkomparda Have you talked with your oncologist about your CA-125 numbers? I get really frightened when..." + (show)
@naturegirl5

@tbkomparda Have you talked with your oncologist about your CA-125 numbers? I get really frightened when I see results that I didn't expect and don't understand.

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I'm having a pet scan at the end of the month get another draw and see my Onc a few days later a week after the last CA125 had to have a tooth extracted which was pretty infected not to the bone yet was on antibiotics for about 10 days awaiting implant cha-ching. I've had no side effects from the Keytruda as the other member did with the dry eyes which is common but the letrozole has been an adjustment just finished antibiotics for a UTI haven't had one in years guess the drop in estrogen causes them sound like the walking wounded. Thank you for checking in appreciate it.

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Apr 18 8:53am
In reply to @tbkomparda "I'm having a pet scan at the end of the month get another draw and see..." + (show)
@tbkomparda

I'm having a pet scan at the end of the month get another draw and see my Onc a few days later a week after the last CA125 had to have a tooth extracted which was pretty infected not to the bone yet was on antibiotics for about 10 days awaiting implant cha-ching. I've had no side effects from the Keytruda as the other member did with the dry eyes which is common but the letrozole has been an adjustment just finished antibiotics for a UTI haven't had one in years guess the drop in estrogen causes them sound like the walking wounded. Thank you for checking in appreciate it.

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@tbkomparda Thanks for the update. It's great you've had no side effects with Keytruda. Will you come back and let me know what you learn from your PET scan, blood tests, and your oncologist?

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annalena | @annalena | Apr 19 2:23am
In reply to @blanchette "Hi @annalena - (hope this isn't a double post; my previous effort seemed to disappear into..." + (show)
@blanchette

Hi @annalena - (hope this isn't a double post; my previous effort seemed to disappear into a digital black hole...)

Update: my uveitis is resolved after 26 days of prednisolone (steroid) eye drops. I had my 4th chemo infusion (minus Keytruda) on schedule last week. And am scheduled to have 5th and then last infusion of chemo plus dostarlimab (instead of Keytruda) on time.

I have amazing news to share. I had my 1st CT scan since starting chemo, and I'm N.E.D. No sign of those 5 metastatic pulmonary nodules. It feels unreal, after almost 9 months of cancer dominating my life. I asked my oncologist if I could skip the last 2 infusions, and he said no, we needed to mop up any microscopic bad boys. Rats!

I hope your own eye problem is resolved and you are doing much better. I'll keep you posted on whether I have any eye inflammation with dostarlimab.

Jump to this post

Hi @blanchette
That is all such great news!

My eyesight continues to slowly improve. It appears to be severe dry eye syndrome since it’s responding to the remedies for that. (My attempts to get an official dry eye diagnosis failed.) I skipped two treatments - my next is scheduled for a week from today & I’m planning to go ahead with it. The plan is to continue with Keytruda. My CAT scan in March showed “positive results” with shrinking of the tumor.

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blanchette | @blanchette | Apr 20 11:56am
In reply to @naturegirl5 "@blanchette Congratulations on your recent exam and N.E.D. and the clearing up of the eye blurriness..." + (show)
@naturegirl5

@blanchette Congratulations on your recent exam and N.E.D. and the clearing up of the eye blurriness problem. This is wonderful news and I'm so happy for you.

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thank you for your kind words.

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