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Looking for others with neovascular proliferation in eyes

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Hi guys

I've had a good read through the various posts on eye bleeds before opening a new one. It appears that others who posted have had eye bleeds related to taking a TKI, and only because of the medication.

Has anyone else been diagnosed with retinopathy and neovascular eye issues because of the CML itself rather than the medication? 

I've had rather a lot of treatment this year, and we thought it was fixed. Now I'm getting eye bleeds about every 10 days and my docs are not very forthcoming on worst case scenarios. The standard treatment would be to burn off large sections of my retina, leaving difficulties with night vision and other (unspecified) problems...so it would be nice to be in touch with anyone whose had the same issues.

Hi Eva,

I had retinal hemorrhages leading to sight loss in the central region of my vision - that was the thing that really got me to get myself checked out before diagnosis. So that was definitely CML rather than TKI related. That was almost all reversed after a few months on treatment as my retinas healed up. I haven't had any vision problems since.

Do you think your issues are not TKI related? Were you having vision issues prior to diagnosis? If you haven't already, perhaps worth seeing an ophthalmologist?

David.

Hey David: Yes I had vision issues since March 2016, having spots like migraine aura, I was diagnosed in June 2016 and by then I was no longer having vision issues. Then in December I (temporarily) lost vision in my left eye, symptoms were not like the ones earlier in the year and had more in common with retinal detactment symptoms : floaters, followed by increasing blurriness and vision loss gradually over a week...there is another full post on this forum somewhere about that.  This led to the neovascular proliferation diagnosis.

Yes, I have been under treatment by retinal specialist since Jan 2017, for a time the bleeds got better now they are getting worse. I dont know if I will lose some of my sight permanently and the docs here are not very forthcoming, I learned of the seriousness of my condition by google search on the terms they used in the medical report for my insurance.

The initial neovascularisation was certainly CML related, but the first set of injections in March 2017 should have fixed that. I wonder if the new bleed might be more medication related.

How were you treated for your eye issues? and where?

Hello Eva,

I developed neovascular bleeding in both eyes while on gleevec. My retina specialist and my oncologist both did research and found one other person, in the literature, that had the same. I had many PRP laser  surgeries and am now having the eyelea shots. My bleeding is close to retinal detachment and my doctor is concerned that this my happen. I have been declared legally blind. If I could be of any help I would be happy to do whatever I can.

Charles

Hello Eva,

I also have had multiple eye issues directly related to CML while on Sprycel.  I woke up in the middle of the night in extreme pain and any light was very painful. After an emergency meeting  with my opthalmologist and retinal specialist,  their diagnosis was retinal hemorrhages, iritis and neovascularization consistent with ocular ischemic syndrome. Treatments were multiple anti-vascular endothelial growth factor intraocular injections and panretinal photocoagulation sessions. If not treated as quickly by these doctors I would have lost some if not all sight in the affected eye.

I'm stable now but have lost some sight as the treatments stopped the progress of my eye disease but could not overcome the damage already in place. My night vision has also been affected.

Good luck to you, I hope your eye issues stabilize.