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MDS diagnosis with DDX41 Germline and Somatic

Blood Cancers & Disorders | Last Active: May 6 9:50am | Replies (32)
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Went today (April 7th) to my MDS specialist to review the results of my genetics test and routine bloodwork. Unfortunately, after 9-weeks the results of the genetics test have not arrived.

However, since my post Disneyworld stomach virus (2nd number), are listed today's numbers (3rd number):

RBC: 4.04 to 3.48 to now 4.05
Platelets: 92 to 67 to now 83
Hemoglobins: 14.2 to 12.2 to now 14.4

WBC: 1.9 to 1.6 to now 2.2
Neutrophils 1.1 to 0.8 to now 1.0
Lymphocytes: 0.7 to 0.7 to now 1.0

For those that have been helping make sense of all this I have been diagnosed with MDS with a ddx41 (R339C) (VAF - 53%) mutation and a somatic missense ddx41 (R525H) (VAF - 11%) variant.

Can anyone help me make sense of all this?

Thank you so much in advance....

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Replies to "Went today (April 7th) to my MDS specialist to review the results of my genetics test..."
Lori, Volunteer Mentor | @loribmt | Apr 8 9:59am

Hi! @asarnesejr Congrats…these numbers look improved over last month! They’ve all pretty much recovered back to what they were previous to when you had the stomach issues on your vacation. Platelets are lagging bit but they are definitely on the rebound from being down to 67.

From my own experience, some of those genetic tests can take a really long time before the results are completed! So hang in there. Keep enjoying life! ☺️

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