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Old Thu Aug 17, 2017, 04:04 PM
DaveAvl DaveAvl is offline
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Join Date: Aug 2017
Location: Asheville, NC
Posts: 8
Hi Neil -

Thanks for your reply. Alan's subtype is RAEB-1. We have a few years' lab data, and the decline in platelets and neutrophils, especially, is pretty striking in recent months.

On his first day of Vidaza (Mon 8/7/17), his pre-injection HG was 8.2, neutrophils 0.5, and platelets 17. On the fourth day (Thu 8/10), they were 7.4, 0.4 and 7. He got platelets and Procrit that day, then two units of red cells the following day. On Mon 8/14 they were 11.4, 0.6 and 12, and he got more platelets. Today (Mon 8/17) they were 10.0, 0.6 and 17, and he received more platelets.

As the doctor at Duke's MDS COE explained, beyond the 35% first-year mortality from SCT are the sometimes-severe consequences of GVH. Alan cannot have steroids: the one time in recent years he was given a short course of them, his HIV broke through and his viral load went from undetectable to 6000. It has taken years to get it back to near its former level, and it is again starting to rise (but only to 60 so far).

Right now we're having labs twice weekly, and they'll support his levels as needed. He reports feeling like a clock which is running down, and has a quite sore belly as expected. Se we'll see what happens...
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Dave age 70, husband of Alan age 67 who was a 25-year HIV survivor and was dx with MDS RAEB-1 5/24/17. Vidaza started 8/7/17. It was ineffective. Passed away 2/7/18.
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