Rare chemotherapy induced eye sight issues. Anyone experienced this??

Posted by Denise @denisestlouie, Oct 15 6:30pm

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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It's going to be ok. I saw the eye doctor. I did injury my eye, a scratch that ulcerated. He said it is possible that my immune system is so malfunctioning at this time I didn't heal and bacteria took over.

So this time I'm not 1 in 100

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@denisestlouie

It's going to be ok. I saw the eye doctor. I did injury my eye, a scratch that ulcerated. He said it is possible that my immune system is so malfunctioning at this time I didn't heal and bacteria took over.

So this time I'm not 1 in 100

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great news, how is it getting treated?

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@charlotte12

great news, how is it getting treated?

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Antibiotics. Bear drops in the eye. Next week I go back to the eye doctor. If it doesn't heal, he'll use steroids

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