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Old Wed Oct 25, 2017, 11:29 AM
kgtuck kgtuck is offline
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Join Date: Mar 2011
Location: Sylva & recently Waynesville, North Carolina USA
Posts: 47
Dacogen

I've been taking Dacogen treatments about 8 1/2 years, since June '09. What I have seen in those years, there doesn't seem to be a prediction from one person to another who will respond and won't. The one thing that was in my favor was no other health problems at all!

But, now things are changing for me - My counts seem to be going down after treatments so my doctors are looking at toxicity from the Dacogen possible causing a low white count and counts are not jumping back up like they should. After waiting 6 weeks out and a 4 day rather than 5 schedule seems to be working! Am I getting too much Dacogen now. Can't seem to find any clinical trials or info on this at all.

I guess we are learning the "long term" effects of this drug, which no one seemed to know a few years back.

Has anyone experienced this after long use of Dacogen?

Thanks, Lynette, there does seem to be a lot of experimentation with dosage and schedule!
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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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