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Old Wed Sep 12, 2007, 11:57 PM
bwf bwf is offline
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Join Date: Sep 2007
Posts: 9
Unhappy Pneumonia (PCP) and MDS

Hi All,

My Mom was diagnosed with AA in 1995 and now, at age 70, was diagnosed with MDS - in July of this year. Appears to be Intermediate Stage 2. Not sure of the blast counts. She started Dacogen about 3 weeks ago, via IV cathaport, and it really set her back - knocked her down. At first, it was fatigue, but then hospitalization. She has been in for 12 days or so now. Her WBC count is extremely low, around 2 I think, and unfortunately, she developed a PCP based (they think) Pneumonia in both lungs. In the last 72 hours, she appears to beating it back somewhat with Vancomycin and Bactrim. Her oxygen levels are better and her breathing is better; and fevers seem to have normalized. Another major complication for her is rectal bleeding; it doesn't always happen / occur, but, when it does, it depletes any blood products she gets. Any success stories around quieting bleeding - other than surgery to remove ulcers (which she had done 6 months ago)?

Also, I was wondering if anyone has had success around other treatments other than Dacogen? Is Vidaza a stronger drug? I've read some on that. And, also, what to make of claims that Arsenic in combo with Etanercept can help??

Just trying to make sense of everything
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Brian, son of Carol, diagnosed AA 1995, treated w cyclosporine, progressed to MDS, July 2007. Being treated w Dacogen currently - unsuccessfully.
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