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Vikas, revlimid is often tried for non 5q patients as well, and there are reports on success as well. My mothers doctor calls it a 'blind trial', After EPO did not work, My mother was prescribed Revlimid (Lenagio in India) 5 mg, but she could not take it beyond 3 days, she has never been good with medication in any case. If your dad's doctor is recommending, he could try this, and have the counts monitored weekly. As per the doctor, there is nothing else that can be tried for her currently. As you know, there are no clinical trials etc in India, and MDS itself is rare/rarely diagnosed.
Since dx in April 2013, my mother would get 2 units every 20 days (when Hb would fall below 7), last time 2units saw her through 30 days, so we are happy. I understand that the duration will vary every time.
Her case is very similar to your dad's case, only low Hb, rest all counts stable and well within normal range, which as per the doctor is very positive for MDS patients. She is also active and feels fine otherwise.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
Last edited by Mseth : Fri Sep 20, 2013 at 12:30 PM.
Reason: typo error
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