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Old Sat May 12, 2012, 07:54 PM
kgtuck kgtuck is offline
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Join Date: Mar 2011
Location: Sylva & recently Waynesville, North Carolina USA
Posts: 47
Wink Dacogen

Neel, I notice that your dad and I are about the same age and same diagnosis. After starting Dacogen, it took 3 months to show improvement and when it did, my counts became stable and have continued to be stable for 3 years. During those first 3 months, my counts bounced up and down, hgb, platelets and white count. I had to have 5 blood transfusions and 6 platelets added during that time until my counts stabilized. I do know that it could take longer, possible 6 months or so for some people. One nurse put it simply, "you have to get enough of the drug in your system before you can expect improvement". I just wanted to share my experience so that you won't be too discouraged! My only side effects are constipation and a day or so fatigue the week after treatments, a slight change in taste/appetite, and also white counts drop slightly, then rise during the 3 weeks between treatments. The best to you and your dad!
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66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.
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