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Author Topic: MDS ("pre-leukemia") info?  (Read 4265 times)
mignon
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« on: September 13, 2011, 12:03:35 PM »

A close friend was just diagnosed with MDS.  She's getting weekly blood transfusions, and I'm helping her with her kids/household.  My web searches have turned up a lot of conflicting information--is this an illness that people ever recover from, or is it chronic?  Do people live with it, or do they usually die within a few years?  The web info is so cagey and hedging that I'm beginning to worry that it is very serious indeed. 

Anyone on the fora have experience with MDS?
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testingthewaters
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« Reply #1 on: September 13, 2011, 02:02:10 PM »

MDS is diverse and there is a lot of (mis)information out there. One of the best places I've found to get information on MDS is the Leukemia and Lymphoma Society page: http://www.lls.org/#/diseaseinformation/myelodysplasticsyndromes/

The disease can take many forms, some of which can be chronic for years to decades, requiring not much more than regular blood transfusions- maybe weekly, maybe every few weeks. That is a PITA because it involves many hours at the hospital for type and cross then transfusion, but other than that, these forms are not so bad.

Some mildly more serious forms respond well to drugs with relatively few side effects like Vidaza or Revlamid (though these drugs can be hugely expensive, so insurance is an issue here). These can also be kept under control, or even go into remission, for many years.

Some forms of MDS can be very aggressive, and can quickly progress to Acute Myeloid Leukemia, a form of leukemia notoriously resistant to chemo, leaving a bone marrow transplant as pretty much the only possible form of treatment, and that is quite radical and risky.

There is a very broad range. Her hematologist is the person who can provide more information about what her prognosis is; hopefully your friend is having frank conversations with her hematologist.

Wishing both you and your friend strength in this.
« Last Edit: September 13, 2011, 02:02:33 PM by testingthewaters » Logged

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testingthewaters
...because the waters are shark infested
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You are getting sleepy....


« Reply #2 on: September 13, 2011, 02:05:54 PM »

I should add to the post above: I'm not a physician and have no background in this field. What I know is from information gathering because of a family member with MDS.

So, once again, the Leukemia and Lymphoma Society is a great source of trustworthy information, as should your friend's hematologist be.
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I'm not really here.  I'm in an alternate universe of productivity. ~fifthyear
mignon
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« Reply #3 on: September 15, 2011, 11:26:32 AM »

Thanks, Testingthewaters!  I'd noticed the range of (mis) info on the Web; your post was very helpful in cutting through some of it.
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