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MDS Myelodysplastic syndromes

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Old Thu Sep 28, 2017, 04:16 PM
JoMac53 JoMac53 is offline
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VK2 + VD3 for MDS

I was reading up on Vit K2/Vit D3 combination therapy for MDS, specifically looking for anything newer than the original 2010 phase II trial, and I came across an article that was actually about a case of transfusion-transmitted hepatitis E in a patient with MDS but the Case Report was about a 70-year old Japanese man who was treated with this vitamin combo and didn't progress to leukemic transformation over the next 10 years. His pancytopenia did gradually worsen over that time and he did end up with infections & transfusions, which was how he got the Hep E virus, but I'm thinking 10 years wasn't bad after all the stats I'm reading about this disease, with & w/o treatments, including SCT/BMT.

He had 8.8% myeloblasts, trilineage dysplastic features, and chromosome abnormalities. He was classified RAEB-1 with an intermediate-2 IPSS score. The report said he was given this treatment because he also had Parkinson’s disease so maybe not a candidate for transplant?

Is this vitamin combo a known treatment for MDS? Does anyone here do it or know anything more about it?
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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Old Thu Sep 28, 2017, 05:26 PM
DanL DanL is offline
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There was a doctor at Cornell University who was working on this a few years ago. I did not see any published data as the result of her trial though. Vitamin D is known to be an important contributor to about 200 bodily functions, including the production of blood cells and the reduction of cancer risk, but taking large amounts of it hasn't been proven to do much for you unless you are already below the normal range.

K2 if I recall correctly helps blood clot more effectively, but is very hard to find in therapeutic doses.

I experimented a little with this myself several years ago and did not really notice a difference. I had normal vitamin d levels though, and had good blood clotting factors despite my very low platelet number.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Fri Sep 29, 2017, 02:44 AM
Cheryl C Cheryl C is offline
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Hi JoMac - There were some conversations about this on Marrowforums a few years ago so if you do a search you might come up with some useful information.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Mon Oct 2, 2017, 11:38 AM
downtown downtown is offline
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Hi JoMac,
I have also been researching this combination but not sure what kind of Vit D3 and how much to take. The 2010 article I read, just says "1 capsule"/daily Vit D3 but doesn't specify. Does anyone know?
I want to start this asap.

Last edited by downtown : Mon Oct 2, 2017 at 11:40 AM. Reason: Dx:2/17-low risk MDS with multilineage Dysplasia and high risk mutations..watch and wait
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Old Mon Oct 2, 2017, 12:07 PM
JoMac53 JoMac53 is offline
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Cheryl, I am but with so many combinations of how it can be written, it's slow going to find them all.

Downtown, like DanL said, the K2 is hard to find in high enough doses that would be affordable. In Japan they use it for osteoporosis regularly in the same dose of 45mg/day but it's by Rx.

The man I read about in the case study received combination therapy with oral vitamin K2 (menatetrenone, 45 mg/day) and vitamin D3 (alfacalcidol, 1 μg/day)*7 instead of chemotherapy. [*7. Akiyama N, Miyazawa K, Kanda Y, et al. Multicenter phase II trial of vitamin K2 monotherapy and vitamin K2 plus 1α-hydroxyvitamin D3 combination therapy for low-risk myelodysplastic syndromes. Leuk Res. 2010;34:1151–7.] The case study is available here http://europepmc.org/articles/PMC3926709#b7-blt-12-103
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Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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