RE: [CML] Hello from a new member

Zavie Miller Thu, 03 Mar 2005 16:36:01 -0800

YAHOOO!!! YIPPEEE!!!

Number 819 in the Zero Club

Zavie

-----Original Message-----
From: John Thompson [mailto:[EMAIL PROTECTED]
Sent: March 3, 2005 5:20 PM
To: [email protected]
Subject: Re: [CML] Hello from a new member

Hi Pat,

I was diagnosed (dx) in Sept 2004 with a WBC of 486,000. Started Gleevec 400mg as soon as I got out of the hospital. I have been in hematologic remission since Oct 20, and CCR since Feb 10th. My response to Gleevec has been better than my hem/onc or I could hope.

I don't want to freak you out, just give you a heads up. You must continue to follow up with your ophthalmologist to monitor your retinas. Just like you, I had hemorrhaging in my retinas, and that remains my number one health problem today. The hemorrhages healed up, but Cystic Macular Edema (CMA), swelling in and around the center or the retina, remains. The CMA has severely impacted my vision. I went from 20/20 uncorrected in Sept to 20/200 today. I got a steroid shot in my right eye last week to try and stabilized the retina. The doctor is not optimistic about my vision and says it will take a few months to see any results...I hope he is wrong. You might want to ask about Voltarin drops as soon as you can. They are anti-inflammatory drops that may help control inflammation in the eye.

Also, make sure your doctor does liver panels on you while you are just starting Gleevec. My liver was enlarged at dx and did not tolerate Gleevec all that well in the beginning.

BTW, we are just about neighbors. I live in Murrieta, CA, just a couple cities over from you.

Don't worry about the CML at this point. Gleevec is a good drug that works on most people very well. You will probably have some bone pain that could get kinda tough to deal with. It passes in about a month for most people. DON'T TAKE Tylenol while you are taking Gleevec.

That's it for my cautionary words. Welcome to the group.

Hope that wasn't too much at once. Feel free to e-mail me directly if you have any questions.

Be well

John

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RE: [CML] Hello from a new member

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