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two problems, medication or just part of CML

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#1 donnadavis


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Posted 19 January 2011 - 08:37 AM

    I am not scheduled to go back to my onc. until April so I thought I would run these

two problems by and see if anyone else has experienced them, Noticing I was having

to move my lap top around to see, I went to my optomologist. Test showed I have lost

50 % of my vision in a year. 

   I have had  a  lot  of bone pain in more or less my big bones since about six months

after diagnosed. Now I have pain in my knees so bad I can barely walk. My family Dr.

did x-ray's  and told me I didn't have any arthritis. He said he would have to do a

bone scan to tell any more. He says bone pain is just part of it. ( I have stayed off my

legs as much as possible this week and it is better but when I start walking  it starts

getting worse again.

   I am retired and my two favorite things are reading and walking my hound dog,

This is not fair! ( I know, no one said life was going to be fair. Doesn't matter, not

fair ! )  


#2 VickiW


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Posted 19 January 2011 - 09:15 AM

Unfortunately, yep.  Joint pain is definitely part of the package.  Good news, for most of us I think, including me, it tends to come and go.  I was on Gleevec for 2 years, now on Sprycel, had the same thing on both drugs.  As for the vision problems, unfortunately, again, yep.  Just prior to dx, I went from reading glasses to trifocals in a few months!  Went back after dx to tell my eye dr. the "why" and he thanked me for letting him know, saying he had never seen anything like it.  Good news (again I baffled him) my next eye exam my rx had not changed!  Again, he said he'd never seen someone with my rx stabilize before.  Just had my latest eye exam last week and again, I only got new glasses because I was tired of my old frames.  Searched it out and CML can definitely cause vision problems, even blindness, but that always reverses once treatment starts (the blindness) but the vision never goes back to where it was.  I know how you feel by the way.  I am an avid reader as well and walking in our woods was one of my favorite things to do.  No longer able but that's another story not due to joint pain although my knees are acting up this morning.

Sorry I was not the bearer of better news.  BUT, I can still read my garden catalogs and spring is coming

Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16

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