Hey there!
When I was intially diagnosed this past Sept my platelet count was 2.85 million. I had plateletpheresis done four times before the gleevec effectively worked to help keep my levels low. When I was initially diagnosed an increased platelet count was my only abnormal blood count. My WBC count highest count ever was 16.1. Is there anyone else out there that had their CML present this way?
Thanks Lindsey
From: [EMAIL PROTECTED] Reply-To: [email protected] To: [email protected] Subject: Re: [CML] rad trial update Date: Wed, 19 Jan 2005 11:01:14 EST Hi Karen, Did the Dr mention that you can have blood apheresis to clean those platelets and WBC; also Agrylyn will bring them down. I had both those things done as the Dr was afraid of stroke with the high platelets. I noticed that not many Drs had the blood apheresis done on patients. How many in this group had platelets in the millions and then had blood aphereisis done? After getting out of the hospital(getting the apheresis done) my platelets soared right back up in the millions. He then put me on Agylyn and Hydrea. The blood counts then crashed so I had to be taken off everything. Finally everything settled down and now my blood is in the normal range. Hang in there; it will get better. Jeanie<3 In a message dated 1/18/2005 6:47:46 PM Eastern Standard Time, [EMAIL PROTECTED] writes: Hi all... Had my 2 week trial visit today. WBC is down from 11.8 2 weeks ago to 10.8. I was hoping it would be a bigger decrease, but at least they are still going in the right direction. Discouraging though that my platlets started to come down (below a million) and now they are back over a million. Stubborn platlets. The dr is pretty certain that my rash on my hands and feet is a gleevec rash (grade 1/2 whatever that means). I have been using the aveeno anti-itch cream which helps the itching. He also told me to take benedryl. He also said my mouth sores are probably some sort of herpes virus and I complained that I was getting tired of eating nothing but soup and icecream (and not even loosing weight!!!). The lidocan helps for a few minutes, but not even long enough to eat a meal. So he prescriped Acyclovir. Again he classified them as grade 1/2. I also asked about the "fragile skin" and he concludes that it is probably because my platlets are not functioning well! ... I also asked about the bms trial at DFCI and he says its still a couple of months away... -karen
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