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asarnesejr avatar

MDS diagnosis with DDX41 Germline and Somatic

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (50)
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Profile picture for lhick @lhick

@asarnesejr I just made a post since being diagnosed w mds eb1 and ddx41. Our stories are very similar. I hope you are doing well, and maybe that you can post an update as to where you are now with your treatments?

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Replies to "@asarnesejr I just made a post since being diagnosed w mds eb1 and ddx41. Our stories..."
asarnesejr | @asarnesejr | Jul 23 4:17pm

@lhick Hiya, sorry we have to become acquainted under such circumstances, but nice to meet you and hopefully support each other. I'm not familiar with eb1 since my diagnosis is Germatic ddx41 (r339c 53%) and Somatic (r525h 8%).

Two posts back is my latest update as of 7/13. It marks 1-year since my diagnosis and I am currently in a watch and wait status. I see my hematologist every 2-months, now increased to every 3-months. The only treatment I am on is weekly B12 injections and daily Folate pills.

Please let me know if I can provide any other information you might need.

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