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Old Mon Sep 4, 2017, 09:33 AM
jmarshall23 jmarshall23 is offline
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Join Date: Sep 2017
Posts: 11
Quote:
Originally Posted by Callie View Post
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...).
I'm really sorry to hear about your dad. If I may ask, what kind of activities did you guys do(I really hope I'm not being too direct, if I am I'm really really sorry). The reason I ask is, my grandpa was always a high energy guy, and this disease has taken his energy down(especially when his hemoglobin is between 8 and 9), and I'm trying to find things for us to do so I can make the rest of his life as best as I can make it.

Quote:
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).
The only thing I know is they are immosuppressant shots and they cost about $1000 a shot. I probably should see if I can get his blood work results before he started taking the shots.

I just wish I could do more. This might seem like a obvious question but is it a good sign that he can go 8 weeks between transfusions? I've been reading a lot and towards the end stages of the disease, people see to have to get transfusions as early as 3-8 days(if it even works). Because he's getting transfusions in seemingly 8 week intervals, can I assume he still has awhile to go?

My grandpa wants to get more frequent transfusions(especially when his hemoglobin falls below 9), is it safe to get more frequent transfusions(even if your hemoglobin is above 8?). I've been reading about iron build up from too many transfusions, but his quality of life goes up when he gets the transfusions(like he can actually drive and walk around).
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