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Old Sun Jun 12, 2011, 09:35 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Holy Moly Darice!

Jens -- and you -- have certainly been through the ringer! I am glad you found us, too, because there are a bunch of folks here with all sorts of MDS who have plenty of information -- and support -- to share.

As you have already figured out, secondary MDS is tougher than the de novo kind. And Monosomy 7 is just about the worst single chromosomal abnormality out there. It generally prompts MDS specialists to move aggressively, so it's not surprising that you are moving right into Vidaza.

I guess that means the involvement has increased from 30.3% to 51.5% over two months?

This gets a "maybe." Typically, when they do the cytogenetic analysis, they only type 20 cells. If you've messed about with statistics at all, you know that is a pretty measly sample. I haven't been able to get a straight answer on the actual margin of error, but it's pretty clear form my own results that a 20-point swing may be within that margin of error.

For example, I had a BMB last October that showed 50% normal and 50% with two chromosomal abnormalities. A month later, I had another BMB that found 45% normal, 30% with one of the abnormalities, and 25% with both. Nine months later, I had 30% normal and 70% with both abnormalities and the same pathologist pronounced my cytogenetics "essentially unchanged."

I double-checked with my physician researcher, who was also non-plussed about the change.

So I wouldn't put too much emphasis on the percentages, unless they continue to increase over time. Finding new abnormalities cropping up, on the other hand, gets the docs excited. That's "clonal evolution," and suggests disease progression.

I'm pretty good at deciphering the cytogenetic gobbledygook, so, if you want any help on that part of your report, post the code and I'll try to take it apart for you.

Welcome! And 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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