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MDS Myelodysplastic syndromes

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Old Fri Oct 6, 2017, 11:37 PM
Rebecca K Rebecca K is offline
Join Date: Jun 2017
Location: Boulder, CO
Posts: 9
still needing RB transfusions 6 months post transplant

Hello everyone,

I had a stem cell transplant/sister donor/reduced conditioning 6 months ago. I also had breast cancer chemo and radiation 20 years ago..

I am feeling very well overall with not great but steady WBCs 4ish, platelets (80) and ANCs (2.5)... but my marrow is hypocellular (5-15 per cent), and my RBCs are not enough to be transfusion independent. Every 12-14 days, I get a unit.

Drs. think I have damaged stromal cells and low cellularity causing the RBC and hemoglobin issue.. everything else looks normal on biopsy (100 % chimerism, normal kyrotype etc.). (Also my sister and I were different blood types).

Docs want to give it time.. anyone else have these issues with cellularity and stromal cells? Did you heal over time or get a med intervention?

Appreciate your inout-- and how informed people are generally on this forum.

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Old Sat Oct 7, 2017, 01:25 AM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 572

I had pretty low cellularity for quite some time and pretty low blood counts across the board for several months after transplant. I had moderate to severe fibrosis at the time of transplant, experienced a minor relapse, and had several other issues for quite a while. I was treated with Vidaza and Rituxan, and actually saw an improvement in numbers after two days of Neupogen one time when I was hospitalized.

The thought was that I had some element of relapse, but was also experiencing systemic GVHD that was possibly suppressing the recovery. My cellularity increased and is normal now, and I have normal RBC and WBC, with platelets that hang out between 100k and 150k.

We didn't have any real conversation about stromal cells or damage to them at the time though.
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 Sat Oct 7, 2017, 08:34 AM
lisa3112 lisa3112 is offline
Join Date: Jun 2016
Location: Melbourne
Posts: 105
Hi rebecca,
I had low platlets (60-80) for months. And my neutrophils sat around 1 for a good 12 months. Googled and researched all possible reasons. Everyone is different in their recovery. I really hope your hb improves with time. My donor was also a different blood type. My bloods are good now, 18 months post. Good luck, Lisa
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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Old Sat Oct 7, 2017, 10:32 AM
Rebecca K Rebecca K is offline
Join Date: Jun 2017
Location: Boulder, CO
Posts: 9
thank you

Thank you Dan and Lisa-

It is good to hear your stories-- that the challenges were there at 6 months but that you are doing well now. I am trying to be patient and to hang on to my optimism.

I hope that you both continue to be well...

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