36 replies to this topic

[DebDoodah22]

My 20/20r, 20/30l vision has gone to a full blurr for distance in the last 2 months...headed to my eye Dr. At the end next of the month...hate to blame the sprycel for one more thing but this is such a radical change. So far it is not responding to the previously mentioned cab sav treatment. guess I will have to keep trying....

[Buzzm1]

My 20/20r, 20/30l vision has gone to a full blurr for distance in the last 2 months...headed to my eye Dr. At the end next of the month...hate to blame the sprycel for one more thing but this is such a radical change. So far it is not responding to the previously mentioned cab sav treatment. guess I will have to keep trying....

PS .. that was sav blanc  ... the TKI, combined with my inordinate amount of time on the computer, makes taillights, at night on the freeway, four feet high .. let us know what the eye Dr. has to say ...

[DebDoodah22]

Aha! Well if I have to switch to white, I better just go get glasses

Yes...night is much worse but days stink too and my computer screen time is unfortunately about 10 hours a day...the readers are working at this point but distance is dicey. Will check back when I see the opthomalogist.

[gerry]

Gleevec (fluid retention from it) seemed to have an impact on my eyes, some days the vision was good, other days a bit like a grey fog was in front of me.

Now I find that due to staring at the screeen for similar amount of time, vision is not the greatest but fine on the weekends and holidays. In my case probably due to focusing at same distance for long periods of time on the computer, plus as you age the muscle in the back of your eye gets weaker in the process of refocusing so it tends to stay in that focus range.

[Billie Murawski]

Buzz it works every time and even if it doesn't you don't care  .

[Gail's]

Sort of related to eyesight . . . I had droopy aging eyelids before gleevec. My insurance will pay for the surgery to correct it once it impairs my vision enough. Now with the puffy eyes I don't have all the wrinkles in my eyelids but they lay over my eyes like hoods. Does anyone know if the surgery would work since I'm stuck with the puffiness?

[Billie Murawski]

Gail my eye eyelids rolled up like windowshades that have been stretched out for decades it's a wonder I can see!

[Billie Murawski]

That didn't come out right I think, my eyelids now look like my knees and it aint a pretty sight scuse my tipin i been drinkin wine because i can HEE HEE

[Billie Murawski]

Gail,  I think Gleevac impaired my eyesight immensly especially tonight even though I've been off it for five years. Seriously in all honestly G did destroy my eyelids damn if I knew my ins would pay for an eyelift I would have had it done. The wedding is in a month is it to late? I was thinking about using duct tape for all my problem areas. I wonder if I could get a discount for buying an unusually large amount. If my eyelids droop anymore I'll be scooping them up with a sand shovel. I gotta go to Lowes I need stuff, shovels, tape, an inconspicuos wheelbarrow I know spell check is yelling at me right now  well spellcheck can find the damn dictionary.

[Billie Murawski]

Well this is weird  I just walked into the bathroom and I had curlers in my hair you know the self stick kind. I don't remember putting them in my hair and why did I do that I have naturally curly hair. I've been experimenting with make-up but not hair yet.

I think I better go to bed before I get the staple gun out, I'm feeling no pain, I could start stapling at the back of my feet and just keep stapling all the way up to the top of my head that would nip and tuck everything like one big zipper. I'll look like Loni Anderson at the wedding as long as I don't turn around and stop taking blood thinners a few days before the wedding. Ya know I'm so smart I scare myself.

  Lets do lunch and then go get our eyes done. Love Billie

[Billie Murawski]

Hey Gail I'm back,

 I just had a great idea I am so uptite about this wedding because I really have aged these last 8 years I know, no shit sherlock, but I am sticking to the tki defense. Wait a minute I forgot what I was going to say

[Billie Murawski]

Well I really and truly can't remember I'll have to get back to you on that. Damn Brain Fog I thought booze might be the answer guess not. You're a nurse if I don't go to sleep can I avoid the hangover that I know awaits me?  Crap, no more liquid diet for me.

[Gail's]

Not sure the hangover is any better without sleep, Billie. Sounds like a lot of crazy memory stuff going on. Did you ever remember when you put the curlers in?

And to be more specific about surgery for eyelids, do you think removing the extra eyelid skin would decrease the swelling or would the swelling come at the same rate? Anyone out there get what I'm trying to ask??

[Billie Murawski]

I do.....my swelling eyelids went down as soon as I went off Gleevac and that's when my eyelids wrinkled I still have puffiness under my eyes I don't know how to put my eyes back to where they were,so I guess I'm doomed to wear oversized tinted glasses.

  I still don't remember putting those curlers in my hair. And I cannot remember what I was going to tell you I can tell you what I wore to school in first grade but not last night.

[Buzzm1]

Billie, it's after 5 in PA ... this week it's Merlot

[Billie Murawski]

Hey Buzz, I can't do Merlot last time I did that I spent the night hugging the porcelain princess. For some reason red wine doesn't like me. Maybe it's because I'm Irish raised by Italians.

[kat73]

Gail's, I DO know what you're talking about, and have occasionally thought about eyelid surgery myself.  I remember when I was on Gleevec I was just so, so upset about this side effect - it colored how I felt about everything.  It didn't help to tell myself it was relatively trivial, my (now ex-) onc couldn't even see it, I should be so grateful about being able to escape an early death.  And yet I felt trapped like a rat in a face I didn't recognize - horrible toad eyes that made me look like I was on a bender or, God help him and bless him, like Jimmy Carter does today, a very sick person.  Trapped forever behind those eyes that were not mine.  Absolutely NOTHING helped.  Switching to Sprycel cut the problem in half, but I still have it.  I've been beaten into submission and am now "used to it."  I don't know how old you are, but I have decided at 64 that eyelid surgery plus continued TKI treatment for the next decade (at least?) would probably not work - whatever eyelid tissue they left would just swell up again.  I try to make the prominent parts recede with dark taupe brush-on (wet) eyeshadow (naturally, discontinued - yes, I have already requisitioned the last remaining inventory on the internet); on the lower lid I brush it in a band where years ago (sniffle) I would wear eyeliner.  Then a lot of mascara, trying to curve what meager eyelashes I still have down or up over the puffy parts.  It helps, I think.  It's funny, whenever I get a glossy feel-good brochure from LLS with jolly folks running marathons and smiling like they're really, really happy they have CML, I recognize immediately the Gleevec eyes.  Takes one to know one!