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Old Thu Oct 27, 2011, 04:32 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
MDS is a lot of stuff

Hi all!

Most of the experts I've hear on the subject lately class MDS as a "Cancer." Even though it lacks a solid tumor, in many cases it works the same way as solid tumor cancers: mutant cells that refuse to die have their reproductive switches turned up past 11 and turn out other defective cells that gum up the works.

Some MDS may also be an autoimmune disorder, which is why some MDSers respond to immunosuppressive therapy.

And, while most experts will say you didn't inherit MDS from your parents and can't pass it along to your kids, we are just now learning that some folks with bone marrow disorders do in fact have a genetic defect that shortens the telomeres on their chromosomes, and, in some cases, those genetic defects do run in families.

MDS is a lot of things, which is why you will usually hear any doc doing a presentation on MDS begin the speech with a definition that starts out like this: "MDS is a cluster of related disorders characterized by ineffective hematopoiesis . . . ." Much of the research on MDS these days is about teasing out the strands that make up that cluster -- that is, distinguishing the different kinds of MDS.

Still, USAF1125 makes a good point that the search for a "cause" in an individual case, if it becomes obsessive, can get in the way of getting on with the healing.

There's no doubt that benzene exposure has been linked to MDS. Everything else is a guess. And, when we are thinking about causes, we often focus on the extraordinary rather than the ordinary. For example, someone who helped clean up an oil spill one summer might focus on that, because it's unusual, rather than on the nitrate-cured bacon he ate every morning for breakfast for 40 years, or the five beers he had after dinner every night for 30 years.

If MDS is mostly about genetic mutation, like other cancers, there are lots and lots of things in the ordinary life of a modern Western human being that can make genes mutate. And, odds are, except in extraordinary cases, the mutagen to blame is one to which the patient was exposed over a long period of time.

My two cents.

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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