← Return to MDS diagnosis with DDX41 Germline and Somatic

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Hi @asarnesejr - given your anxiety, why don’t you ask for a sooner appointment and do another blood check sooner than April 7th?
Indeed, blood readings can fluctuate a lot - not only due to objective reasons, but also due to the test accuracy. I had some blood tests last year when my neutrophils doubled and halved if I were to believe those readings. Such “phantom” fluctuation might easily explain your latest results. However, I would say it is better to be safe than sorry.
What is your RBC and lymphocytes (the latter is obviously also on a low side)?
Have you also discussed the treatment plan with your MDS doctor? Whether the potential transplant donors have been identified? It might be not on your immediate radar, but you rather have all future steps articulated and aligned in advance.
Did you stay with the same doctor during your MDS history or also got an independent second opinion?

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Replies to "Hi @asarnesejr - given your anxiety, why don’t you ask for a sooner appointment and do..."

@igorp My April 7th appointment is with the MDS doctor. I don't want to move it sooner because the results of my genetics test will be back for review on that date.

When I first started this journey I was seeing a hematologist and Anderson Cooper with all blood drawn at Labcorp. My second opinion was with the team at Penn Medicine with all blood drawn right on their campus. I have found that Penn Medicine has given me a sense of confidence in their professionalism.

My RBC went from 4.04 down to 3.48 over the last 2 months

My lymphocytes remained at 0.7 over the last 2 months

I will confirm on April 7th if a donor has been identified yet.

Any thoughts?