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Hi Caregiver,
Your husband's MDS seems similar to my mother's MDS, with the red cells affected, monthly transfusion, while whites & platelets are normal. I agree with you on the amount of paperwork, appointments, tracking blood counts etc etc, its quite a handful and added to that is the fear of the unknown and progression of the disease.
MDS is a rare and rarely diagnosed problem in India, hence no centers of excellence and limited experience in hospitals here.
Has revlimid been recommended as a treatment option?
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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
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