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#1
Thu Dec 8, 2011, 12:51 AM
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AA for 25 yrs now Severe MDS
My brother was diagnosed with Aplastic Anemia when he was 12. It was serious for some years, but when he was in his early 20s, it seemed to fade into the background (transfusions not needed as much, iron overload had lead to diabetes, but nothing else) Now at 37 he has been diagnosed with severe MDS. He went through 2 rounds of Vidaza. Both resulted in low counts and infections. He has been in the hospital for most of the past 3 months since the diagnosis - in for 7+ days for treatment and then whatever the aftermath has been. He checked himself out yesterday (did get oral ABX), against medical advice, because he didn't like the care (and he'd been there for most of 3 months...). He's at home now. He probably/may still have an abdominal infection and pneumonia. We're in Orlando. Today we're trying to get him in to the Moffitt Cancer Center in Tampa. I don't really know what I'm asking here... I know the outlook is not good since MDS is secondary to AA. He has NO immune system now and just a couple platelets swimming around. Trying to get him back in the hospital asap - the new one in Tampa, not the one in Orlando. It's hard to wrap my mind around him. Tests and radiology reports say he should be extremely sick. He doesn't look it and hasn't for weeks. Moving back home was great for his mental health (180 degree turn from yesterday), but his physical health looks so bad on paper. Just looking for hope, suggestions, anything. Thanks!
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#2
Thu Dec 8, 2011, 02:37 AM
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So sorry to hear of your dilema. I wish I could say something very wise that could help. Hang in there. Hope you find some really good Doctors in the new hospital who can make some postive moves for you.
Is a Bone Marrow Transplant an option for him? Seems like he really needs it now. Hope there is a perfect match in the wings waiting for you guys... All the best, Julie
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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#3
Thu Dec 8, 2011, 07:32 AM
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I think it's smart to get him to a better facility like Moffit. It's so important to be in place that understands AA/MDS. And at his age, transplant is an option.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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