← Return to MDS diagnosis with DDX41 Germline and Somatic

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Profile picture for Lori, Volunteer Mentor @loribmt

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?? ☺️

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Replies to "Hi @asarnesejr Reading through your reply, I found myself smiling and nodding! Yes indeed, you can..."

@loribmt Thanks Lori, the only thought that occupies my mind is that, just using platelets as an example, is that in 2012 they were 153 and now in 2026 they are 80. Don't they have to continue decreasing (along with my other numbers)?