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Old Thu Jul 31, 2008, 01:49 PM
Phyllis Phyllis is offline
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Join Date: Jul 2008
Location: Lake Worth, Florida USA
Posts: 3
Looking for support group in south Florida

We live in Lake Worth and are trying to find others who are dealing with MDS (RAEB) so that we may form a support group.
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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 Fri Aug 1, 2008, 08:59 AM
Dick S Dick S is offline
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Join Date: Jan 2008
Location: Florida
Posts: 189
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Quote:
Originally Posted by Phyllis View Post
We live in Lake Worth and are trying to find others who are dealing with MDS (RAEB) so that we may form a support group.
I'm not exactly in your back yard, I live in Sebring. However; I get my primary and Oncology care over there at the West Palm Beach VA Hospital, in fact I will be over there Tuesday Aug.5th for my next checkup. I would be very interested in what you could put together as there is not even a cancer support group here in Sebring. See my tag line for what I have, 2 1/2 years of agony. I can be reached at hidiso1024@vistanet.net or 1-863-386-0458. Good luck with your endeavor and keep me posted.

BTW, in 2003 the VA didn't have the ability to do heart stents and they shipped me over to JFK Hosp. in Lake Worth to have them put in. In my opinion an outstanding, first rate Hospital. FYI, they have a cardiac wing that is second to none.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.

Last edited by Dick S : Fri Aug 1, 2008 at 09:48 AM.
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  #3  
Old Fri Aug 1, 2008, 11:01 AM
ESeda ESeda is offline
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Join Date: May 2008
Location: Naples FL USA
Posts: 89
Hi Phyllis,

Welcome to the BMForum. My wife Nellie has MDS, dx in 03/08. We live in Naples and only know of you and Dick S that are near by, so far.

I see your husband just started Vidaza. Nellie just completed her third cycle and has shown great improvement. I am sure your husband will do the same. You can see her #'s shown in my signature below. Please let us know more about your husband so we can compare and be able to help comfort you throughout these challenging times.

All the best to you and yours.

Eli
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Eli, husband of Nellie (64), dx 3/08 MDS RAEB-1 w/abs, 2nd BMB 9/08 after 4 cyls blast dn to .5, Vidaza reduced 50% on 11/19 after sudden drop in CBC, 8th cycle completed 12/26/08. BMB 2/09 blast 17%. Seven day Induction Therapy completed 3/23/09, Started Salvage Therapy 5/5/09. Stopped 5/8/09.
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  #4  
Old Wed Dec 17, 2008, 02:11 PM
Eileen Eileen is offline
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Join Date: Nov 2007
Location: FL
Posts: 47
Question support group west FL

Hi Everyone,
Still looking for a support group near Clearwater or ST Petersburg FL
Sebring & Naples are a couple of hrs away,is there anyone closer?
Happy Holidays to you all,
Eileen
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Eileen.72,dxMDS 2007.currently on vidaza,procrit & neuprogen.
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