Eye Issues on Herceptin or Kadcyla?
Hello All,
I was originally on Herceptin/Perjeta for HER2 positive cancer, but switched to Kadcyla after lumpectomy revealed some residual disease left.
I now have Retinal pigment epithelial detachment (PED) which is a common manifestation in macular degeneration. While I am 61, I've never had any issues with my eyes and no one on either side of my family has ever had any form of macular degeneration.
I will see a retina specialist later this week, but just very worried about potentially losing my vision and whether it's related to the toxic nature of my treatment.
Wondering if anyone has experienced anything similar?
My onco has paused the Kadcyla until she gets info from retina specialist.
Thank you for this incredible community.
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Hi @juliegillesp We're so sorry you're experiencing all of this. Here is some information on Kadcyla:
We don't know of this as a side effect, however, we so hope that your specialist (retina and med oncologist) can figure out if they are related.
Here is a list of treatments that are known to have potential effects on vision: . We have also seen that studies with Herceptin could cause some vision or eye issues. However, macular degeneration is very different.
Please keep us posted! We're anxious to hear what they say, and find a solution for you.
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Thank you!
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hi Julie,
While on Herceptin, I developed a case of uveitis. That’s not what you’re experiencing, I know, but like you, I’d never had any sort of problem like that. Neither my ophthalmologist nor my oncologist knew anything about a link between the two. The clinical pharmacologist at the cancer center did a search and I think he found one other report of uveitis. So your case may be rare indeed, but it doesn’t mean it’s not connected.
Good luck.
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Thank you amycinny….I appreciate your sharing your experience.
Did your eye issue resolve? Did you stop Herceptin?
Warm regards.
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Hi. Im on 9th session of kadcyla and lately i have been having really dry eyes, so dry that it bothers me at night. My right eye is dryer than left and i have difficulty opening my eyelids so i take tear drops. My vision is also weaker (keep in mind that i did wear glasses before chemo) but the number has decresed even further. Other than that, so far so good.
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My mom developed floaters shortly after her second session of TCHP chemotherapy, with no prior eye issues, and now describes her vision as "seeing through lace." Both eyes are affected, but the right is worse. Initially misdiagnosed with dry eyes, we learned it was uveitis after starting Kadcyla. Despite being on Durezol and preservative-free lubricating drops, she struggles with intense light sensitivity, wearing sunglasses indoors, and only going out at sunset—not to mention fatigue and other symptoms. If anyone has similar experiences or advice, we'd greatly appreciate it.
Wishing everyone strength and a healthy recovery—you are our heroes!
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Hi @maximvs, and welcome to our Breastcancer.org community! We're so sorry for the reasons that bring you here, but we're really glad you've found us. You and your mom are sure to find our community a wonderful source of advice, information, encouragment, and support — we're all here for you both!
Others should be by shortly to weigh in with their experiences. In the meantime, thanks for posting and we hope you find what you need here. If you need anything at all, please don't hesitate to shoot us a PM.
—The Mods
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Hi @The Mods,
Thank you so much for your warm welcome and support; it means a lot to us during this challenging time. I'm grateful to be part of this community and am looking forward to hearing from others who may have experienced something similar. We truly appreciate the space you've created for people like us.
Thank you again for being so uderstanding and supportive.
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