Clinical Trial Fibrogen 2216
Last summer I participated in a clinical trial at UMass on Fibrogens 2216 for 5 weeks. I did not experience a positive response with this drug but looking back maybe I should have stayed on it longer. Anyone participate in a clinical trial with this drug or any others for treatment of MDS? What were the results.
RAEB dx Feb. 2006
My husband, David is currently on such a trial with Dr. Raza at UMASS. He's on day 87 of a 113 day trial. He's at the maximum dose (2500 mg), feels awful, nausea, loss of appetite, sharp stomach cramps, and even greater fatigue than he normally has--but he's sticking it out, because whatever results there have been seem to come after the trial is over. He is tansfusion-dependent, every 2 weeks, that hasn't changed--yet.
Your Dad's respnse sounds like mine. When I went to the higher does with Dr Raza I felt terrible so I opted out but my trans fusion frequency never got a whole lot better. I was 4-5 weeks then all of a sudden I went to two weeks. So I went to a Dr Voorhees at UNC Chapel Hill, NC and he did a bone biopsy and then put me on Dacogen. My results to date on Dacogen have been fantastic. If you want call me at 910-791-6745 and I will fill you in on the details.
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