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New diagnosis DDX41 MDS-EB1: what made you start treatment?
Blood Cancers & Disorders | Last Active: 15 hours ago | Replies (4)Comment receiving replies
Thank you, Lori -you are so helpful! I am starting to get the hang of this website haha. I appreciate all the other patients as well, and seeing that people are doing good who are further along on their journey.
I am just getting back results from another bone biopsy to see how I have progressed, and then will be meeting with my doctors in the next couple of weeks. That being said, what I have learned here about Mayo Rochester sounds amazing. I really would love to hear their opinion as well and will talk about possibly going there w my husband. I just wish it was closer and better timing since other close family members are having health issues too that makes the trip more difficult to plan.
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Hi @lhick - it is not unusual with DDX41 MDS to watch and wait, but you also need to watch your blood counts - especially neutrophils and platelets. The latter looks on a low side for your blast %.
I was diagnosed with DDX41 AML (which most likely developed on the back on DDX41 MDS) - this happened 15 months before I actually started the treatment - such long period is highly unusual for AML. Germline DDX41-driven MDS/AML is typically very indolent and in some cases may take years to develop when some more aggressive AMLs may take only a few weeks.
It is probably unlikely that your blasts declined - most likely it is just slight variation in different parts of the marrow and accuracy of the tests. At the same time the fact that that the blasts are not growing is a further evidence of the indolent nature of your MDS.
Just as a side note, your germline variant R339 looks slightly unusual. You somatic one on the oyster hand is by far the most common somatic variant for DDX41.