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Rare chemotherapy induced eye sight issues. Anyone experienced this??
I completed my third round of Carboplatin AUC 5, Taxol 175mg/m2, Heceptin 8mg/kg.
On the 4th day I started having severe eye issues, light sensitivity, they hurt, tear, I can't focus, I can't keep them opened and I'm functionally blind. This is my 4th day like this. The oncologist says this happens 1 in 100 so it's a rare occurrence.
The doc says both the carbo and TAXOL cause this. He gave me the option to do the next round with carbo only so we can determine which drug to blame.
The care manager is encouraging me to stay the course she said the replacement drugs have some very harsh side effects.
I have an appointment with my optometologist on Saturday and my best friend is a director of pharmacy at a hospital who is researching my situation. I don't have to make a decision until 10/28 so I have time to get more info and see if it resolves.
I have 3 more cycles or 12 weeks plus to go. If this is something that will resolve in 4 or 5 days I can manage around this. But if it doesn't I don't know how I will manage being functionally blind for 12+ weeks. Maybe as much as 3 months post treatment.
I was managing the side effect well. I don't get sick, I only have 2 or 3 fatigued days. This is so rare it wasn't even talked about during the education session, that was basically a waste of time because all they addressed was hair loss, nausea, mouth sores, low white blood cells, but not things like you might have to push back your treatments if your body doesn't respond well and you blood cells didn't come back high enough to receive treatment today or you could lose your eye sight.
Has anyone experienced what I'm describing?
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I didn't have any vision problems, but I did have one strange experience that might be relevant. On my second or third cycle of carbo/taxol, I had been reading about caloric restriction and its possible benefits for chemotherapy. So the day before my infusion, I decided to cut way back on carbs. I may have overdone it (best I recall I was eating broth with broccoli in it.). That evening I suddenly lost ~90% of the hearing in one ear for no reason. I thought about how the nervous system requires glucose, and I ate some pasta, followed by some ice cream. My hearing was back to normal by the next morning. Since then, I have avoided dietary experiments and have not had a repeat of the hearing loss, despite another 12 cycles of carbo/taxol. So I'm wondering if the keto-ish diet you're on is contributing to this issue.
I don't think so. I've been on the diet prior to diagnosis. So I've been eating this way for about about 4 months and I want whole food plant based anti inflammatory about 18 mos ago. That is also low carb.
I didn't mean to to suggest that the diet alone was responsible. Maybe a combination of chemo and the diet.
I never tried it, but I suspect that pre-chemo I could have subsisted on broth and broccoli for days without it affecting my hearing.
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1 ReactionI did not experience what you are describing, I finished my 6 cycles of carbo/tax/ bev or avastin and now occasionally my eyes feel like I have sand in them, also I feel some pressure. It is fluctuating. Maybe another side effect of which I have many: during the chemo treatment and still now, a month later.
I had similar vision problems on Keytruda:
https://connect.mayoclinic.org/discussion/keytruda-causing-eye-side-effects/
Just sharing in case it’s in any way helpful.
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1 ReactionI was advised to see the eye doctor. The care manager said eye issues resolve or stablish within 3 mos of last treatment
I'm hoping it's just a scratched eye, but scratched eyes usually hear within days not a week.
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1 Reactionyes, let us know about your appointment on Saturday, I hope your eyes recover quickly. I see an optometrist
end of month for my annual visit, she does a thorough exam. If needed I will get a referral to an ophthalmologist if I still have issues or she finds something off.
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1 Reactioni'm very sorry to hear you're having these side effects. Taxol is the same as Taxotere I believe? I had read up on Taxotere b/c I had an option to take it for chemo, and had found that there is a class action lawsuit against them regarding long standing eye issues with it. The below link may be useful to you. Sending positive thoughts that your eyes quickly recover.
https://www.torhoermanlaw.com/taxotere-lawsuit/taxotere-eye-injury-lawsuit/#:~:text=About%20The%20Taxotere%20Eye%20Injury,eye%20damage%20and%20vision%20problems.
They are not the same drugs. Made differently
google and you can find this here
https://www.gilmanbedigian.com/taxotere-vs-taxol/
chemo drugs don't list all possible side effects, report them immediately to your doctor,
you can also report them to FDA at 1-800-FDA- 1088