36 replies to this topic

[ricodence]

I am woundering if there is anyone who eyesight before getting diganosed with CML. 

 

My white Blood Count was 500,000 and cause busting of blood vessels in the eyes.  I was 20/120 in right then 20/350 in left. I was in the hospital for 10 day..  Basicly I was almost blind.  4 months later my right eye has came back, except at night it does not see the light as well.  My left eye has a blurry spot in my vision. My doctor says that my never go away..

[rcase13]

My WBC was 260k and I have issues with my eyes since starting Tasigna. I get blurry vision spontaneously in addition to rolling flashing lights in my periphery. I've been to retina specialist and other eye specialist and basically nothing is wrong and I just have to live with it.

[Antilogical]

rcase - I'm guessing migraine.  I used to get the headache kind, but now I get the visual ones.  They start at the periphery and close in on me.  I see lights and some weird bicycle-chain thingies rotating.  When it starts, I take an OTC pain pill and sit down with a cup of coffee, and they usually subside in a half hour. 

[Floa7]

I wake up in the morning and see flashes of lightening, streaky lights for like 10 seconds. The Doc thought I was having strokes and I ended up seeing 4 specialists....after all them tests Docs couldn't find anything wrong with me. hahha...  I was also taking emago 3 fish oil for cholestoral  I went a week without the emago 3 fish oil and my light flashing had stopped. So no more fish and oil....

 

My son also has CML. He switched from Gleevec to Sprycel. Sprycel gave him headaches, His eyes were hemoraging. The doc prescribed him 600 mg of Ibuprofin. That's a blood thinner also. He is now blind in one eye and legally blind in the other

[Damerault]

Has your white blood count returned to normal? I had the same problem when I was diagnosed with CML. My white blood count was so high it caused blood vessels to form behind my eyes. After time when my white blood count returned to normal the spots eventually went away. Have youseen an opthomologist? I did, and they did a series of tests and scans on my eyes. I would go see a specialist. Good luck.

[Billie Murawski]

I had a couple eyebleeds when I was first dx. Less than 2 years after being on Gleevac I had to have cataract surgery, there are a few people on this forum who have had the same problems. It took only 7 months for the cataracts to mature and have to be removed,usually it takes at least a couple years. The good news is I can see distance now, I was very nearsighted and couldn't see anything without my contacts or glasses, now I can lie on the couch and see tv or look outside, but I cannot make out anything up close now without my glasses.

[Gail's]

Billie, I'm sorry to hear of all you've bee through. Do you know if you had cataracts before starting gleevec?

[rcase13]

Interesting I was told I had the beginning stages of cataracts. I am only 44. I am nearsighted with a strong prescription and was told that can cause them early. Can't help but wonder if CML had a hand. I did not have eye issues until CML. Oh well who knows...

[Marnie]

A month before my diagnosis, I had an eye appointment.  No cataracts.  Then I was diagnosed with cml and began Gleevec.  A year after being on Gleevec, I had developed cataracts. While on TKIs, my vision deteriorated rapidly and I have since had cataract surgery.  I have no doubt that at some point in my life, I'd have developed cataracts, as my father had cataract surgery at age 75.  However, I had my surgery at at 50, which is unusually young.  I believe that the TKIs had an impact on cataract development. 

 

That said. . .my vision since the cataract surgery is fantastic.  Don't hesitate to go forward with cataract surgery if you need it.

 

Marnie

[Billie Murawski]

Hi Gail,

  I go to my opthamologist faithfully once a year, and I had no sign of cataracts before so my doc figures it must be the G. I have the worst luck, my one lens has come loose so I have to have that eye redone, I keep putting it off because Ron has had so many appts. I guess I better get on the ball and just do it!

[Billie Murawski]

A month before my diagnosis, I had an eye appointment.  No cataracts.  Then I was diagnosed with cml and began Gleevec.  A year after being on Gleevec, I had developed cataracts. While on TKIs, my vision deteriorated rapidly and I have since had cataract surgery.  I have no doubt that at some point in my life, I'd have developed cataracts, as my father had cataract surgery at age 75.  However, I had my surgery at at 50, which is unusually young.  I believe that the TKIs had an impact on cataract development. 

 

That said. . .my vision since the cataract surgery is fantastic.  Don't hesitate to go forward with cataract surgery if you need it.

 

Marnie

 Marnie, my vision changes a lot every year, I know you got the other lenses  do you still have to wear glasses to see up close? If I could be guaranteed that my vision would stablilize I would consider paying extra for the lens that I have to get replaced. My friend got those lenses and she'll never need any kind of glasses the rest of her life. I was always afraid to get laser surgery, I wonder if you can still get cataracts if you had that procedure! If your lens does happen to come loose you'll see some cool floaters and zig-zags.

[Marnie]

I got the toric lenses.  They were VERY expensive, and not covered by insurance.  I was exremely farsighted with a lot of astigmatism before the surgery (I started wearing glasses when I was 3).  They weren't able to completely correct my vision, so I do still wear glasses.  However, I can see quite well without glasses, which is a huge difference from before. 

 

Your eye doc and eye surgeon should have a pretty good idea if toric lenses will correct your vision completely.  Mine were both up front about the fact that toric lenses might not do the job because of my extreme eyeball shape.  (Go Vikings. . .my eyeballs are footballs).

 

Marnie

[Buzzm1]

Scientists have developed an eye drop that dissolves cataracts

http://www.digitaljo.../article/439248

 

A team of researchers at led by University of California, San Diego have developed a new drug in eye drops that can shrink and dissolve cataracts, which may become an alternative to surgery.

 

cataracts are the leading cause of blindness in people worldwide.

 

[Billie Murawski]

Scientists have developed an eye drop that dissolves cataracts

http://www.digitaljo.../article/439248

 

A team of researchers at led by University of California, San Diego have developed a new drug in eye drops that can shrink and dissolve cataracts, which may become an alternative to surgery.

 

cataracts are the leading cause of blindness in people worldwide.

Wow that would be fantastic I developed cataracts less than a year after starting gleevac 7 months later I had cataract surgery. Every year my script changes a lot I can't see real good especially small stuff eye doc said I'll never have really good vision I was very nearsighted before cml, my eyes got so bad I couldn't even wear contacts anymore I even tried the gas permeable so I am just thankful I can see at all.  Billie

[Buzzm1]

I'm probably going to need those cataract dissolving eyedrops before my next drivers license vision test so I hope they hurry the human trials along.  I was really worried about passing the vision test when I renewed a little over 7 months ago ... the girl who gave me the DMV vision test seemed to take a liking to me and probably cut me some slack.   I have always spent an inordinate amount of time on the computer and it plays hell with my eyes focusing at a distance ... developing cataracts contribute to the problem.

[Billie Murawski]

Buzz, the tki's make your eyes extremely dry, at least it does mine the eye doc has given me two different types of eye drops to use they do help clear my vision for a while I use them about every four hours or so, or when I can't see, that reminds me it's time for a dose or a glass of wine depending on what time of day it is. Of course it's always 5'oclock somewhere .    Billie

[Buzzm1]

Brandy Billie, appreciate your suggestions; I use an over-the-counter solution (Systane Ultra/Costco) to flush the crap out of my eyes periodically  ... but haven't tried the wine method ... last time I had a drink was over three years ago, two beers at my oldest brother's wake, and it was probably equally as long before that ... maybe that's part of the problem ... the cases of wine I have on hand should be good and aged by now ... and then there's a really well-stocked liquor cabinet if that helps solve the TKI induced dry eye cataract problem ... 

[Billie Murawski]

Buzz, One thing we have learned on this board is that wine has many benefits ie the more you drink the less you worry about cml. Just kidding but my onc and cardiologist both told me a couple glasses of wine  in the evening is good for you. It relaxes you and helps you sleep better. It worked for me at first but now I have had this insomnia for over a year nothing helps. I keep trying different types of herbal teas and nothing seems to help. I tried white noise and that helped for a couple weeks but that's all UGGH!!!!!

[tiredblood]

I have dry eyes, I believe as a result of the TKI.  Sometimes I wake up with what feels like a very dry spot on my eyeball, even if I use OTC eye ointment before going to bed or if I put in the gel type eye drops that are OTC.  

[Buzzm1]

Buzz, One thing we have learned on this board is that wine has many benefits ie the more you drink the less you worry about cml. Just kidding but my onc and cardiologist both told me a couple glasses of wine  in the evening is good for you. It relaxes you and helps you sleep better. It worked for me at first but now I have had this insomnia for over a year nothing helps. I keep trying different types of herbal teas and nothing seems to help. I tried white noise and that helped for a couple weeks but that's all UGGH!!!!!

Billie, i chilled and opened a bottle of sauvignon blanc on Saturday night, and finished it today; you were right, I can see more clearly now and I'm not worried about my CML.   Thanks again