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MDS diagnosis with DDX41 Germline and Somatic
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (50)Comment receiving replies
@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?
Replies to "@loribmt Hi again. I went for my 2-month checkup with my hematologist on 07/13. After the..."
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Hi @asarnesejr Reading through your reply, I found myself smiling and nodding! Yes indeed, you can take this as a good indication that your doctors are liking what they see with your labs being stable.
From my own experience, we don’t get our ‘leashes lengthened’ between appointments if our doctors aren’t sure of their decision. They base appointment frequency on the trends with lab blood numbers. Yours have remained stable, which indicates your doctors aren’t anticipating any rapid changes taking place. To go from 2 month intervals to 3 months is super encouraging!
I know, I know…I’ve gone through it too! Each time there was a longer time span between tests, I was filled with a little trepidation! But I also learned that my doctors wouldn’t adjust the time for longer intervals if I wasn’t ready. Imagine my shock a couple of months ago when my local hematologist, after looking at my latest labs, told me there was no clinical reason for me to continue coming in to see him. I’ve been seeing him for 7 years…I’m responsible for many of his grey hairs! LOL. But my cancer is gone, it won’t be returning. So gulp, I’m totally off-leash now!
I know you’re concerned about the potential for a bone marrow transplant in the future. But if you’re at a very low risk for progression perhaps you won’t even need one! Your numbers are not changing much. So, take this as a really positive sign to get out and enjoy your life! Try not to dwell on those pesky ‘what if’ scenarios. You are good to go with a nice reprieve! What can you do with the extra time you’re not spending at your doctor’s office?? ☺️