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Old Mon Sep 4, 2017, 08:46 AM
Callie Callie is offline
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Join Date: Jan 2014
Location: Fayetteville, NC
Posts: 25
Good morning! As with all of us on here, I am so sorry you had to find us and that your Grandpa and family are experiencing this. However, we welcome you and welcome any questions you might have! I am most definitely not a doctor, but a caregiver. What you'll find is knowledge is key to asking the right questions, but each patient is so different from the next. What works for one may or may not work for another. The type of MDS will be important to find out. With that being said, my dad's prognosis was bleak - 6 months maybe without treatment (RAEB II, numbers declining very quickly) and we didn't know if any of the courses of treatment would work. Fortunately they did and he lived a good life for the next 3 1/2+ years (still way too short...).

He was 67 at the time, with transplant at 68. RAR (another member) was several years older than that. Age isn't a final factor, but doctors may feel 89 to be too old (I could be wrong, though!). Other factors come into play - overall health (i.e., diabetes, heart function, etc.), disease progression at the time, etc. You mention immunosuppressant shots. Is he receiving azacitidine (Vidaza) shots? If so, yes - they can cause the blood numbers to decrease before they start working (generally takes several cycles).

We all wish you the best. Please feel free to ask any questions that might arise.

Callie
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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