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Old Sun Jul 1, 2012, 04:42 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Quote:
Originally Posted by ACorvino View Post

The final pathologic diagnosis states:
*High grade myeloid neoplasm most consistent with refractory anemia with excess blasts 2 (RAEB-2)
*Trinileage dysplasia with increased blasts (12%)
*Neutrophils 24%
*Neutophils & bands 16%
*Neutrophil metamyelocytes 7%
*Neutrophil myelocytes 4%
*Neutrophil promyelocytes 2%
*5q31 deleted
Hi Confused!

Sorry to hear about your father-in-law. It's hard to imagine going through two units of blood in 48 hours.

These results say he has MDS with 12% blasts. That's not AML, which is generally diagnosed once blasts go over 20%. Trilineage dysplasia means his bone marrow is messed up in producing all three blood cell lines: reds, whites, and platelets.

Sometimes, once Dacogen quits working, docs will try Vidaza. They work more or less the same way, but sometimes folks will respond to one and then the other.

Usually, Revlimid is given to folks with deletion 5q, and your FIL has a partial deletion of 5q. But Revilimid can really knock down the platelets, which is probably why they feel he's not a candidate for it. (I'm thinking that 50K platelets is about the bottom for that, though I could be disremembering).

I can't get clinicaltrials.gov to come up right now, so I can't read any more about the trial he's been offered than what's on the WVU website. But it sounds to me like a research trial, not a treatment trial. That doesn't mean he shouldn't do it, but it doesn't appear to be oriented toward making him better in any way.

I'm not a big fan of rushing into stem cell transplants. But, if I were in your FIL's position, with huge transfusion needs, dangerously low platelets, lots of infection risk, I would be looking real hard at a transplant -- particularly if you've got a family member that matches.

If you don't want to go down that route, then you might ask about trying Vidaza, or look at some of the clinical trials out there that are combining Vidaza with other drugs to increase effectiveness. If you need help finding those, let me know and I'll help you search for them.

If you want help reading some of the earlier BMB reports, I'd be happy to help with that, as well. You can post them here or in a private message, or email them to me.

It does seem like you need to make a move. If this is just an "MDS setback," it seems like a pretty dangerous one.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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