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Old Mon Sep 4, 2017, 10:39 PM
quantpsyc quantpsyc is offline
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Join Date: May 2017
Location: Leland, NC
Posts: 24
Hi bossywife (ha love the user id!)
Interesting, I think I should do a survey to find out the true incidence of the mds/ppi association!
Technically, if Dx was to be based on the (unreliable) BMB then yes, he would have been downgraded. But, instead the doctors just said..."seems like it's difficult to get an adequate BMB from you"...and "blast estimates between 5% and 15%" Given the whole picture, unreliable BMB and no MDS mutations in chromosome we still question the RAEB part of the Dx. So far my hubby is feeling much better than 5 months ago, and his counts are stable, and somewhat higher, than in April So far, heme/on says keep doing what you are doing. Tomorrow we get more blood work. Will post an update.

Please let me know how your hubby's last BMB and gene panel turns out. I would like to know if it's possible to get a good BMB if one is truly hypocellular (one of Ed's was done locally, other at DUKE, both "inadequate" samples)

Kathleen
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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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