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Old Sat Jun 11, 2011, 02:00 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Sandy!

All the folks who encouraged you to get your brother's written permission to talk to his doc are right on.

I can help with some of the question you ask, but not all.

The IPSS Score is important, in that it often determines what sort of treatment a hematologist will want to recommend for your brother. The score is made up of three components:

1. Blasts (what percentage of immature white cells are clogging up the marrow)
2. Cytopenias (i.e., how low are his blood counts)
3. Cytogenetics (whither his bone marrow stem cells have any abnormal chromosomes, and, if so, which ones).

So, based on the results you shared, we have 1 & 2, but not 3. The cytogenetics part of the bone marrow biopsy report often takes longer to come back from the lab that the other parts of the report. (Maybe a week or two). But, if its been long enough, you should be able to get his doctor's nurse to fax you a copy. Once you get it, you can let us know what it says, and we'll help you figure out what all that means.

You should download this booklet (PDF) from the Leukemia and Lymphoma Society (though I do wish they'd get a new cover model; the lady that's on there is highly annoying). I think its the best of all the introductory booklets on MDS. Page 10 and 11 have the IPSS stuff.

Based on the standard IPSS system, your brother gets half a point for having a blast percentage between 5% and 10%. He gets another half point because his ANC is below 1500 and his platelets are below 100,000. (The ANC is the 44.8% you reported multiplied by the WBC count (2.4 x .448 = 1.075 or 1,075 ANC. Some labs use 1.5 (meaning thousands); some use 1500.)

So, he has a score of 1, which is Intermediate-1 MDS. But we don't know yet about his cytogenetics, and that could add to the score. Some chromosomal abnormalities -- like deletion 5q -- are actually considered a "good" thing, because there are specific treatment liked to those.

Generally a Low or INT-1 IPSS score is classified as "low risk" while a INT-2 or High are considered High Risk.

Is he having any bleeding or bruising issues? Some people do with low platelets, but that's highly variable from individual to individual.

Going to Cleveland Clinic is a brilliant idea. They are top-notch for MDS. And it's much better to get the second opinion from an MDS specialist before starting treatment.

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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