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Old Thu Sep 25, 2008, 02:21 AM
Wayne O'Shana Wayne O'Shana is offline
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Join Date: Jan 2007
Location: Vista, CA
Posts: 15
End Stage MDS?

Hi Susaq:

Don't think "end stage" without looking at counts and IPSS score first. Could you provide that information? No alternatives? From the information you provided it is hard for me to beleve that your dad is getting proper treatment. Please remember that when you hire a hem/onc they can be just as stupid as any other worker, and should be retained or fired just as you would a plumber or a carpenter. I was able to train one hem/onc and was happy to get rid of three third-raters. If you have not already done so click on "Medical Resources" at the left side of the home page and search "US Treatment Centers". There are several good places in your area. You might consider what worked for me:

1. Demand that all blood be leukocyte reduced and irradiated at time of collection. This is important for pts getting chronic tx.

2. Epogen 60,000 and Neupogen 300 once per week. They work together so demand the combination.

3. Try to maintain Hgb in a range of 10.0 to 12.0. Going outside of this range can cause trouble.

Please keep us posted.

Best wishes...
__________________
Middle-aged (83 yo) dx Nov 4, 1997 w/MDS-RA+pancytopenia, tx about 18 mo. Responded to EPO+G-CSF. Ferritin dropped from 2500 to 480. Three non-fatal heart attacks, five non-fatal strokes and a lot of TIAs. Otherwise in very good health.

Last edited by Wayne O'Shana : Thu Sep 25, 2008 at 02:24 AM. Reason: typo
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