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MDS diagnosis with DDX41 Germline and Somatic

Posted by asarnesejr @asarnesejr, Jan 7 7:10am

For the last 6 months I've been going to a Hematologist to determine the cause of my low WBC, low platelet count and low B12 level (153) and a history of binge drinking (I've since stopped drinking). Normal Hemoglobin of 14.3. Also been on Clonazepam and Lorazepam for my anxiety for the last 22 years.

After 4 months of weekly B12 injections, my B12 came up into the 500 range, and my MMA level is in the normal. I was also prescribed Folate supplements along with two BMB 3 months apart.

After 6 months, all my numbers stayed the same: WBC 1.9, ANC 1.1 Platelets 192
My Hematologist sent me to an MDS specialist who determined that I have a low grade MDS with a DDX41 variant, both hereditary and somatic.

Recommendation is to wait till my Platelet count goes below 50 or my Hemoglobin level goes below 10 then go directly to a Stem Cell Transplant.

I am scared beyond belief. I am a 61-year-old white male. They could not give me a prognosis on the success of this procedure, or how they define success (6-months, 6-years, etc....).

The plan is I would have this procedure done before I need chemo, stay in the hospital for 1-month, then for 3-months on an outpatient basis go to the hospital twice a week. With a 1-year best case recovery.

Has anyone gone through something similar to this or can give me any information about this? Please any input would be greatly appreciated.

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asarnesejr | @asarnesejr | May 5 4:46pm
In reply to @loribmt "Hi @twitt1949 There is no actually cut off age for a BMT though they usually aren’t..." + (show)
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Hi @twitt1949 There is no actually cut off age for a BMT though they usually aren’t performed on patients beyond 75. And at that age the patients have to be in relatively good health with no other medical issues.
I’m not going to go through all the particulars of a bone marrow transplant for you because it’s not germain to your situation.
There are many other treatment options available for patients with MDS. You watched the really informative video you provided. So the questions you gleaned from the video will be a great starting point of conversation with your doctor.

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@loribmt The stem cell team just got back to me today. They told me that the only matches they had were 7/8 match. I'm not sure what that means. Is this good or bad?

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Lori, Volunteer Mentor | @loribmt | May 6 9:50am
In reply to @asarnesejr "@loribmt The stem cell team just got back to me today. They told me that the..." + (show)
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@loribmt The stem cell team just got back to me today. They told me that the only matches they had were 7/8 match. I'm not sure what that means. Is this good or bad?

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Hi @asarnesejr Donors for a stem cell transplant are chosen by how closely certain markers, called Human leukocyte antigens (HLA) match up to your current immune system. With the transplant, you’d be receiving that donor’s immune system as your own so a close match is important. Also, as a side note, blood type matching isn’t important. It’s the HLA markers.

Standard testing looks at four pairs of HLA markers, called 8/8 matching. More detailed testing adds a fifth pair (DQB1) to make 10/10 matching.
So a 7/8 match, if there are no other options is considered an acceptable HLA match.
Here’s how donors are chosen.
Cancer.org https://www.cancer.org/cancer/managing-cancer/treatment-types/stem-cell-transplant/finding-a-donor.html

There’s a lot to absorb, I know. I have resource links to send you if you’re interested in more info.

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