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  #1  
Old Wed Aug 13, 2008, 07:01 AM
Phyllis Phyllis is offline
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Join Date: Jul 2008
Location: Lake Worth, Florida USA
Posts: 3
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  
Old Sat Feb 14, 2009, 09:52 PM
helen c. helen c. is offline
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Join Date: Feb 2009
Location: FL.
Posts: 57
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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  #3  
Old Sun Feb 15, 2009, 11:04 AM
Dick S Dick S is offline
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Join Date: Jan 2008
Location: Florida
Posts: 189
I live in Sebring, maybe if we could find a couple more we could start our own group.
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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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  #4  
Old Sun Sep 12, 2010, 11:08 PM
Raina Raina is offline
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Join Date: Jul 2010
Location: South Florida
Posts: 5
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  
Old Mon Sep 13, 2010, 12:23 PM
Dick S Dick S is offline
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Join Date: Jan 2008
Location: Florida
Posts: 189
Quote:
Originally Posted by Raina View Post
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.
I would be happy to know when and where.
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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  
Old Sun Jun 5, 2011, 12:24 PM
renobabe renobabe is offline
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Join Date: Jun 2011
Location: Port saint Lucie Florida
Posts: 10
Cool 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  
Old Tue Jul 26, 2011, 09:25 AM
Bob Macfarlane Bob Macfarlane is offline
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Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 126
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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