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#1
Wed Aug 13, 2008, 07:01 AM
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Support in south Florida
I am looking for a support group in south Florida. My husband has MDS, RAEB (8%) and is on Vidaza injections.
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Husband started treatment for MDS ( RAEB) with Vidaza on 5/21/08. The latest hematology was WBC 1.0, RBC 4.13, hemaglobin 11.2, and platelets 60 on 7/28/08. 
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#2
Sat Feb 14, 2009, 09:52 PM
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we are in lakeland florida. my husband was diagnosed in jan. 2008, vidaza was started he had 5 rounds and then was in complete response for 3 months. vidaza was restarted in jan. 2009 he is 67 and his blood counts are 13 for red blood cells 3.5 for white and 56 for platletts he has raeb-1 intermediate stage.
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#4
Sun Sep 12, 2010, 11:08 PM
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South Florida Support
I was referred by my dr. at Cleveland Clinic to a support group by the leukemia and lymphoma society and it includes mds. I don't have the info tonight but I can get it for you. I have not gone yet. They meet in Weston.
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diag. 5/2010 hypoplastic mds cyclosporine didn't help, aranesp, looking at Vidaza
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#5
Mon Sep 13, 2010, 12:23 PM
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Quote:
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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#6
Sun Jun 5, 2011, 12:24 PM
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Hello From Port Saint Lucie Florida
Hi IN 2010 aug I was up in Robert Packard Hospital in PEN doc said im doing a bone marrow test (ouch) and He found I Have MDS and I have had 2 transfusions one up in NY and One Here Ai Lawnwood med. now fri doc said I have RA whats this Well he wants to give me a 2nd shot of ARANESP I guess no ins this is going to hurt again Transfusions where 4500.00 out of pocket we have payments going.well just to say Im In PSL if we have anyone near hi Reno
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#7
Tue Jul 26, 2011, 09:25 AM
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Aranesp
I give myself a shot of Aranesp every week. I works get for me and keeps my HgB between low 9 and 11.9. Wide swing but better than just continuing to drop.
Veterans' Affairs supplies my drugs because my MDS was caused by exposure to Agent Orange in Vietnam. I am willing to chat with anyone interested. I live in Southwest Ranches (west of Davie and south of Weston). 954-232-7190.
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