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Old Sun Apr 29, 2018, 06:56 PM
Rebecca K Rebecca K is offline
Join Date: Jun 2017
Location: Boulder, CO
Posts: 9
low hemoglobin 1 year after stem cell transplant

I am wondering if anyone has experienced what I have and might have a creative solution. I am one year out from an otherwise very successful stem cell transplant for MDS. My sister's stem cells are fully engrafted and my WBCs and platelets are solid. I still however have low hemoglobin and I have 2-3 transfusions a month. My doc thinks my strommal cells were damaged when I had breast cancer 20 years ago (chemo caused the MDS) but she thinks they are slowly healing. We tried promacta, steroids, and immunosuppressants. Anyone else have this situation and can shed light? I would be very grateful

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Old Tue May 1, 2018, 12:16 AM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 585
I can't say that I had the same exact circumstances, but I had low blood counts for over a year until I got PCP about 1.5 years out and the doctor gave me about 3 shots of neupogen. Since that time, all of my counts stabilized and have been close to or above low normal.

I don't know if there is any true causality, but the timing worked that way for me. Prior to that, my HgB was hanging out around 11 or 12, WBC always between 2 and 4, and platelets below 100. I am now 4 years out, have 17.2 HgB, WBC between 4.5 and 9, and platelets around 140.

It might be worth the conversation.
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 Sun May 13, 2018, 01:03 PM
Rebecca K Rebecca K is offline
Join Date: Jun 2017
Location: Boulder, CO
Posts: 9

Thank you DAn.. what I would give for your hemoglobin. Mine is between 7.0 and 8.0... what is PCP?
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Old Tue Jun 11, 2019, 07:25 PM
quantpsyc quantpsyc is offline
Join Date: May 2017
Location: Leland, NC
Posts: 20
Rebecca, PCP is Pneumocystis pneumonia.
Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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