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Old Wed Oct 25, 2017, 01:31 PM
Sue&Dave Sue&Dave is offline
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Join Date: Nov 2016
Location: New York
Posts: 50
Hi Rich - I agree with others - your mileage may vary. When my husband began responding to Vidaza (Dacogen's kissing cousin), the first question out of my mouth was "how long?" To which his doc did not have an answer. What she did tell us though, was she had patients that have been on it for 7 years. She also said that the 1-2 year standard answer was based on clinical trial data, and to the best of her knowledge no further studies have been published on the long-term effectiveness of these types of agents. She also pointed out that many people that participated in the clinical trials were very sick to begin with and/or had other comorbidities that contributed to relapse. In my husband's case his blasts never went above 6%, but his 3 counts were abysmal, he had intermittent fevers and significant fatigue. Without all of his symptoms he probably wouldn't have started on the Vidaza. But we are truly thankful to his response. As a matter of fact, the only med he is on right now is the Vidaza. He will be starting Round 11 next month. We have the option of going to transplant, and keep in touch with that practice, ready to pull the trigger when necessary, but for now - we are riding the Vidaza train. Choo choo!
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