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DiscussionMDS diagnosis with DDX41 Germline and Somatic
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@loribmt Hi again. I went for my 2-month checkup with my hematologist on 07/13. After the 1-year mark, all my numbers stayed the same: WBC between 1.6 / 2.2, Hemoglobin between 12.2 / 14.4, Platelets between 67 / 92, ANC between 0.7 / 1.1. These numbers aren't trending downward, rather bouncing all around over the 9 CBCs I've had.
My IPSS-M risk score is -2.25 c/w very low risk.
Both my hematologist and MDS specialist have approved moving my CBC checkups from 2-month to 3-month intervals.
My MDS specialist noted that in my paperwork, in 2012 my platelets were at 153. She feels that my MDS was active at that point.
Does this make any sense to you. Obviously, it's good news that my numbers have stayed steady for a year, yet I feel like a rock is about to come crashing down on me with each visit. To be honest, it's scary that 1-year has gone by already, and I'm one year closer to the inevitable. You have much experience, what are your thoughts on all of this?