22 replies to this topic

[scuba]

Anyone have vision affected after taking Gleevec? 

[donnadavis]

I have started going to my optometrists monthly because of vision problems that started after I was on a higher dosage (800mg) of Gleevec for three months. I actually developed black streaks across my field of vision. Also blood vessels burst in the back of my eyes and I have a spot on the back of eye he his monitoring. When I got back to 400mg my vision gradually improved.

[BethG]

Hi Michael,

I was on Gleevec for approx. 9 months before discovering the T315i mutation and started the Ariad trial. I have had eye sight challenges. At diagnosis, my eyes were full of extra wbc--when I would turn the lights on in the morning, it was like watching a fuzzy tv for a few seconds. Once my counts got back to normal, that went away. I have had dark spots in my vision; again, they cleared up over time. I have had two vision exams in the past year and each time my vision was worse. I'm not sure it is because of my age (I'm 45) or because of the meds or the disease, but my vision has changed. Thankfully, they are able to make prescriptions strong enough to correct my vision and I can see...lol

Good luck to you on your journey.

[scuba]

I had Lasik surgery a couple of years ago which restored my eyesight to that of a 20 year old.  It was great.  I still use reading glasses only because I want crystal clarity when I read, but otherwise don't need glasses.  The key is whether I can read a wine list at a restaurant without glasses - which I can do.

However, since starting Gleevec 8 days ago, I noticed yesterday that my left eye is a little fuzzy - not as clear as it has been.  I don't know if it is Gleevec or just some dryness that can happen from time to time when you sleep - especially if your eyes a cracked slightly with good air conditioning (dry air).  I don't have any of th bleeding because my platelet level is strong (upper end).  I'm told that will change as Gleevec kicks in.  I hope Gleevec doesn't affect my vision.

Thanks for any insights.

[Tedsey]

Leukemia and Gleevec can effect your eyesight.  My onc suggested I see an opthamologist just to have him/her monitor me.  She said there is evidence that retinal changes can occur while taking Gleevec.  I am extremely myopic. When I first started taking Gleevec, my vision got more blurry.  It got better in a few months.  Good luck to you.

[td1961]

Removed by poster due to privacy concerns.

td1961

[cryjohn]

Michael, I'm on day 8 of Gleevec and have noticed that my right eye, which is my weakest is running like a faucet.  It is very strange, no problems with my left eye.  I have never had this problem before and I did take note that it started about 4 days ago.  I was wondering if it was the Gleevec and your question seems to have answered my question. 

Crystal

[Merisangel]

Hi all, one of my first symptoms that something was wrong was that when I woke up in the morning I saw lots of stars and after about half an hour they disappeared.  I went to the eye dr and they didn't find anything wrong.  When I donated blood is when they found my white count was way out there and I was then diagnosed with CML.  About two months after starting G, I didn't see stars anymore, but my eyes starting hurting and my onc started me on steroid eye drops and within a few weeks the pain went away but once in a while I get some eye pain, but I just try and rest them.  Recently I have noticed that when reading I get blurring vision that hangs on for a couple hours, but haven't been to the eye dr yet to get it checked out.  Hope this helps.

[Trey]

You said "I woke up in the morning I saw lots of stars and after about half an  hour they disappeared".  Was it dark when you saw the stars, and then the sun came up?

Really though, before diagnosis I had vision problems a couple times.  Possibly the thick blood that kept oxygen from the eyes.  The eyes especially rely on small vessels and capillaries to supply blood, and thick blood cannot get through as easily.  So they can be affected by thick blood.  After the blood thins out there can be other issues with the eyes such as internal bleeding in the retina.  So blood flow has a lot to do with eye issues.

[Merisangel]

Hi Trey, my onc said it was probably caused by all those white cells that were fighting for space and no where to go...lol  Since it went away after my count went down once starting G, then I guess he was right.

[threedprof]

so i recently went to my eye doctor because I am having some slight double vision(ghost image above one another) in the AM that goes away after i move about.  This seems to happen when i eat something sugary/carby the day/night before.  It could be that my family history of diabetes has finally caught up to me, coincidently, while taking Gleevec.  With my glucose numbers in the normal range from diet and exercise we were able to rule out retinal neuropathy.  He examined my eyes internally and found them to be quite healthy and nothing abnormal.  He was about to prescribe a new set of glasses when i mentioned that my eyes get a bit "googly" when i look in certain directions.  Then he did a pen focus test and said he measured this a bit a few years ago and doesn't think it's a serious issue(brain tumor) as it likely would've manifested itself into something serious by now.  However, to be safe he wants to confer with a neurologist friend and go over the side effects of Gleevec.  This would lead to a consultation and an MRI.  I've found a website that lists some vision side effects of Gleevec: http://www.ncbi.nlm....pubmed/12964961 "..WHO classification of side-effects is as follows: certain: periorbital edema; probable: epiphora; possible: extraocular muscle palsy, ptosis, blepharoconjunctivitis.." when i saw this we spoke again and he said that my vision abnormality falls under this extraocular muscle palsy.  ugh...either way i'd like to make sure i don't have a brain tumor.  Does anyone have any additional information or anecdotal evidence of this side effect? Joel

[Happycat]

Joel,

No anecdotal evidence about Gleevec and effects on eye sight.  However, I will say that if you do see a neurologist and get an MRI, don't be surprised if they find "something".   Imaging is just so darn good now they see all kinds of stuff that they can't quite explain or understand.  They just see it.  I've had imaging surprises in my liver, my twin's fetal imaging scans, and now in my eldest dd's brain.  And since it's the brain, they can't go poking around in there willy nilly.  And different radiologists will see the same spot on an MRI and come back with different diagnoses, or possible diagnoses.  I just went through 18 mo of followup MRIs with my dd because one of the radiologists thought it might be a low-grade neoplasm.  Four MRIs later and they finally found a different set of experiments to prove it was something else.  However, even though they finally figured that spot out, they also found a cyst in a bone in her ear, and THOSE can grow and cause pressure, so now we're back in the same situation - multiple MRIs to follow it.

Anyway, that's my cautionary tale on brain MRIs.  Sometimes they leave you with more questions than answers.  Make sure you have good insurance coverage for the MRIs, because if you get into a situation requiring multiple MRIs, 20% copays can add up quickly!

Let us know how it goes,

Traci

[threedprof]

Thank you Traci. I'll keep that in mind. I sure do miss the days where all I had to worry about were scraped knee or my grades.

[Lolaboo]

I have been taking G about 5 weeks and have noticed my eyes watering ALOT within the last week.  Not to be gross, but when I wake up in the mornings, my eyes are completely crusted/matted shut.  It's not allergies so I'm assuming it's the Gleevec.  Anyone else have this problem??  Thanks, Lisa

[Pin]

Hey Lisa - Yes! I don't notice the watery eyes during the day (I live in a dry climate, so if they are watery it probably helps me!) but I do notice crud on my eyes when I wake up...I wondered what this was, but it must be this!

I have been taking Gleevec for about 4 weeks.

Thanks! Pin

[Marnie]

Hi, Lisa. . .

I had the same thing and assumed pink eye, so went to the doc for drops.  Mistake.  That didn't work. Went in again and he gave me different drops.  Mistake.  Finally went to the eye doc and he diagnosed it correctly.  Not at all related to TKIs or leukemia. I can't remember what it's called.

Try this and see if it works:

3 times per day - use baby shampoo to wash your eyelids (eyes closed, of course).  While washing, massage the lid area to stimulate the oil ducts, upper and lower lid line (don't press on the eyeballs, though).  Once I got rid of the goo, it has just been a matter of maintenance.  Every time I shower in the morning, when I'm washing my hair, I wash my eyelids, too.  Haven't had a problem since.

This condition is common among people of Scandinavian descent.

'Course, I can't guarantee that's what you have, but it's worth a shot.  My eyes were so crusty in the morning, that I couldn't even open them without prying my eyes open with my fingers.  Totally gross!

Good luck,

Marnie

[Marnie]

Oh, and I forgot.  Get a washcloth VERY hot and press it to your eyes (just don't burn them).  Do this with the lids closed.  Do this 3 or 4 times after you've washed the eye lids.  This also stimulates the oil ducts.  What happens is that the ducts get clogged, so you need to open up the pores or ducts, or whatever.  Apparently some people produce more oil than others, and those types of people have a problem with crusty eyes. It took about 3 days for it to clear up, and then no problem (now that I wash my eyelids regularly).

[Lolaboo]

Thanks Marnie, I will definitely give this a try!!  Lisa

[Marnie]

I pulled out the info sheet from my eye doc and it's called Blepharitis.

Good luck getting rid of it, if that's what it is.  Didn't take long for mine to clear up, and haven't had any issues since.  If the hot compresses and washing don't take care of it, see your eye doctor.