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Old Sat Aug 26, 2017, 01:12 AM
quantpsyc quantpsyc is offline
Join Date: May 2017
Location: Leland, NC
Posts: 8
Originally Posted by Neil Cuadra View Post

It's cautionary to hear how a bone marrow biopsy where they can't harvest enough cells may affect the confidence in a diagnosis.

Despite the MDS-RAEB2 diagnosis from the first visit to Duke, do you now doubt that Ed has MDS at all? Have any hematologists offered other possible explanations for his pancytopenia?

Despite Ed's slightly low counts, it sounds like you're busy living your lives, and that's great. Enjoy those grandchildren!
I am a statistician and have worked in clinical trials for 25 years, so numbers are my thing, I really did not like the broad confidence intervals around the blast estimates, and the lack of mutations increase our uncertainty. So yes, we do have our doubts...more so about whether its RAEB or not, as it is clear SOMETHING is wrong with his bone marrow, some other possibilities have been looked at and ruled out. We suspect that 15 years on proton pump inhibitors is related to the problem...maybe years of malabsorbtion? He is no longer taking PPIs; Instead he takes a tablespoon each of apple cider vinegar, lemon juice, and honey in 8oz of water morning and night, and is completely free of the awful GERD LIKE symptoms he was suffering from (the turmeric also helps with this). Endoscopy (after the Dx of cirrhosis) did not show the esophogas of someone with GERD for 15 years! Whatever this is we feel like we are at least keeping it from getting worse, and in fact Ed is feeling much better than he was 4 months ago, and his counts have improved. While the doctors are agreeable to our "active survellience" we do get the impression that the MDS doctors are humoring us, and see it as inevitable that Ed will need "real treatment" and transplant. If that has to happen, then he will go that path, but only after giving the alternatives a chance.
A Christian musician/comedian we like, Mark Lowry, has a skit about "God is in the interruptions." It is so true, and this is one of those interruptions, and God is here with us. Bless everyone having to deal with these issues! And again, thanks everyone who takes the time to share on these forums, it has been so helpful for us!
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", March 2019 expect MUD-HSCT.
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