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Old Wed Jun 27, 2007, 01:21 PM
Zoe's Life Zoe's Life is offline
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Join Date: May 2007
Location: Logan, Ohio
Posts: 127
Rhonda,

There are many factors that are considered when determining life expectency. Cytogenetic subgroups: Good, normal, del(5q) only, del(20q) only, -Y only; Intermediate, +8, single miscellaneous, double abnormalities; Poor, complex (ie, 3 anomalies) or chromosome 7 abnormalities. They also look at number of blasts, the number of cytopenias, age at diagnosis, and to a lesser degree, gender.

http://bloodjournal.hematologylibrar...full/89/6/2079

The Blood Journal, and author Greenburg have a lot of info on MDS.

I was slightly anemic for 2 years prior to my diagnosis, and I believe that was because of the MDS. Don't rule out the MDS prior to the actual diagnosis. Often, even after the actual diagnosis, the protocol is watch and wait.

http://www.lrf.org.uk/en/1/infdispatmye.html

http://arpa.allenpress.com/arpaonlin...29-10-1299-t01

http://www.questdiagnostics.com/kbas...0000062929.htm

http://www.vidaza.com/corporateweb/v...IPSSCalculator

http://theoncologist.alphamedpress.o...t/full/2/6/389

http://209.85.165.104/search?q=cache...s&ct=clnk&cd=2

http://www.asheducationbook.org/cgi/...ull/2002/1/136

http://www.allaboutmds.com/corporate...Content/Groups

These are some of the websites I have found helpful. Hope I got the links right for you.

Hang in there. Ask lots of questions. Feel free to vent. Ask different people the same questions. Recently my hemoglobin was dropping steadily (still in 11 range, but it went from 11.9-11.1). I was afraid it was the beginning of a slow downward trend. When I asked at the cancer clinic, all I heard was that as long as I stay in the 11 range it is good. It didn't help--I didn't ask the question well enough I think. When I asked the chemo nurse at the local hospital she told me it is normal to fluctuate like that and it doesn't mean a downward trend. It could easily be back up at my next lab. That gave me peace of mind. I understand that some folks have lived for 18 years transfusion dependent. It does cause new complications--they take time, after so many you have to look at iron overload, etc.--but transfusions alone do not signal the end is near. Take it one day at a time, and enjoy life and help your uncle do the same. Praying for you and your uncle also.

Zoe
__________________
Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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