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Old Thu Apr 19, 2012, 08:16 AM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Beth!

Sorry to hear about your husband's disease. I'm with Neil and Bebop; a diagnosis of high-risk MDS is not, necessarily, a reason to forego treatment.

Since you're a nurse and likely very familiar with the "staging" used for solid tumor cancers -- and you've said you're not all that familiar with MDS -- I think it's worth noting that "staging" isn't exactly the right idea for the IPSS (International Prognostic Scoring System) in MDS. Even though some folks (and even doctors, who should know better) use "Stage 2" or "Stage 4" when talking about the IPSS score, that's really misleading.

Why? Because, if you are used to solid tumor cancers, when someone says, "Stage 4," your mind immediately goes to metastasized cancer, present in several organs, no hope but really aggressive chemotherapy that might be worse than the disease.

That is not an accurate way to think about an IPSS score of 4 - High Risk. High Risk MDS is dangerous, but treatable. For High Risk MDS, particularly with excess blasts, the standard of care is Vidaza or Dacogen, at least six monthly cycles. The alternative is stem cell transplant. That might be a tough road given ET's co-morbidities, but it could be worth exploring with a transplant specialist. If Vidaza or Dacogen doesn't work after six cycles, there are some clinical trials that would be worth trying.

For what it's worth, while 8.0 is my trigger point for transfusion (and I always get two units), my docs at the National Institutes of Health tell me their standard is to transfuse below 9.0 for folks over 60 years of age, 8.0 for younger folks.

Good luck to you. We're all here to help, so keep asking questions. Does ET have any chromosomal abnormalities that showed up in his bone marrow biopsies?

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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