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Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?

Blood Cancers & Disorders | Last Active: Sep 23 6:01pm | Replies (94)
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Profile picture for asarnesejr @asarnesejr

I just saw the pathology report from the 2nd hospital.

They noted DDX41 (R525H) (3% vax) as a possibility for MDS.

Is anyone familiar with this?

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Replies to "I just saw the pathology report from the 2nd hospital. They noted DDX41 (R525H) (3% vax)..."
sherbs | @sherbs | Sep 8 12:47pm

Hi there,

I also have a DDX41 mutation.

I'm not sure what hospitals you are working with but would highly advise you seek an opinion from Mayo Clinic. They are the experts in the field when it comes to DDX41 mutations. There are many sub-types of DDX41 mutations - some with quite good prognosis and other that might warrant going down the road of a BMT sooner rather than later.

It wasn't until I went to Mayo and met with their physicians that I felt I had a path forward based on evidence that I could understand myself.

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