Home         Forums  

Go Back   Marrowforums > Regional Discussions > Your Local Area
Register FAQ Search Today's Posts Mark Forums Read

Your Local Area Connect with people in your city, state, province, or region

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Apr 21, 2008, 09:09 PM
junglegirlsue junglegirlsue is offline
Member
 
Join Date: Mar 2008
Location: Southlake, TX
Posts: 12
Smile Is there a MDS support group in Texas?

My Mom really wants a support groups. Her dr didn't know of one. We live in the Dallas/Fort Worth area.
Reply With Quote
  #2  
Old Thu Apr 24, 2008, 06:33 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 440
I called my doctor's office in Dallas. They did not know of any, but did a Google search and found a "forum" (this one?).

You might call Leigh Clark at the AA & MDS Foundation. She was helpful in finding me some people with my condition to talk to.
__________________
Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #3  
Old Fri Apr 25, 2008, 02:37 PM
Dick S Dick S is offline
Member
 
Join Date: Jan 2008
Location: Florida
Posts: 189
I have searched and asked and have never found any local support groups. We are too small in number and we are scattered far and wide across the states and the world.
My hope is one day we will get the attention and respect this disease deserves, along with that will come funding, research and eventual medicines and possible cures. We can only hope and work at it.

The only helpful place I have found is this forum and I thank God for that, I finally found out I am not alone and others know what I am going through.

I finally get my BMB next Tuesday and I can finally put a name on my disease and possible treatment, instead of just Bone Marrow Failure or myelodyspasia. Two years of suffering and just hearing "it's not that bad YET" is really getting to me. Sorry for the rant.
__________________
Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
Reply With Quote
  #4  
Old Tue Apr 29, 2008, 09:43 PM
Margie Margie is offline
Member
 
Join Date: Sep 2007
Location: Wylie, Texas
Posts: 42
Is there a MDS support group in Texas?

I also live in the Dallas area. I have not located a support group. However, it would seem that there are at least three of us around the area.

age 68 Myelodysplasia 5 1/2 years. Transfusion dependent.
Reply With Quote
  #5  
Old Tue Aug 12, 2008, 08:51 PM
Margie Margie is offline
Member
 
Join Date: Sep 2007
Location: Wylie, Texas
Posts: 42
Is there a MDS support group in Texas?

Picking up this thread of thought again, is there anyone in the Dallas, Richardson, Plano, McKinney, etc. area that would be interested in meeting every 3 months or so, just to become acquainted and to share information and experiences? If so, please email me through the forum and I will share my email address.
Reply With Quote
  #6  
Old Sun Oct 18, 2009, 01:18 PM
Mimi C Mimi C is offline
Member
 
Join Date: Jun 2009
Location: Fouke, AR
Posts: 14
MDS in Dallas area

My mom was dx with MDS in Jan 09 and is in a clinical trial at Baylor. Doubt we would be available for meetings since we live 4 hours away but would enjoy sharing information and thoughts via this forum.
__________________
Mimi, daughter of Lucy age 77, diagnosed MDS Jan. 09; Vidaza Jan 09-Jun 09 no improvement; Clofarabine clinical trial Oct 09-Feb 10 mild improvement in blasts; blasts 4% in Aug 09; 30% Sep 09; 2% in December; 30% in March; AML diagnosed April 2010 .
Reply With Quote
  #7  
Old Mon Oct 19, 2009, 04:14 PM
MichelleD MichelleD is offline
Member
 
Join Date: Oct 2009
Location: McKinney, TX
Posts: 10
Hi Margie,

I have AA that has morphed into MDS and also have PNH. I'm treated at UT Southwestern. I live in McKinney and would love to get together with others in the area.

Michelle
__________________
Michelle, 41, SAA, treated with ATG Dec 2003 & May 2006. dx PHN & MDS, May 2009.
Reply With Quote
  #8  
Old Mon Oct 19, 2009, 09:22 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 440
Quote:
Originally Posted by MichelleD View Post
Hi Margie,

I have AA that has morphed into MDS and also have PNH. I'm treated at UT Southwestern. I live in McKinney and would love to get together with others in the area.

Michelle
I'm also at UT SW and live in Dallas. It works for me, even if it's only once.
__________________
Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #9  
Old Wed Dec 9, 2009, 12:35 PM
rschem rschem is offline
Member
 
Join Date: Mar 2009
Location: Creston,BC,Canada
Posts: 28
Smile Rschem

HI everyone ,
Is there anyone with marrow diease in southerrn BC? I live in Creston. DX. Aug. 2008. Treated ATG in Vancouver Sept. Ihave partial recovery,no transuvions since Oct. 2008. I am on 350 mg. cyclosporne.My blood tests are HG 116, pt. 101,wbc 6, ng 4.4
I an 62 and was in good health 20007, Ihad a double bypass in Jan. 2008.
Have no heart problems since bypass surgery.
Reply With Quote
  #10  
Old Thu Dec 10, 2009, 11:14 AM
Margie Margie is offline
Member
 
Join Date: Sep 2007
Location: Wylie, Texas
Posts: 42
Is there a MDS support group in Texas?

To MichelleD

I live in Wylie, Texas, and would be delighted to meet with or even to talk to someone who has MDS. If Neal or someone would be so kind as to refresh my memory on how to post my email address or telephone number where it is available to members only, I will do that. My mind will probably be working better at some point than it is now. It just seems to take a vacation ever so often.
__________________
Age 70 MDS RAEB-1 Counts now critically low in all three lines. Transfusion dependent.
Reply With Quote
  #11  
Old Thu Dec 10, 2009, 11:58 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,490
Margie,

You don't need to post your email address or phone number at all because there are two other solutions already available:
1. Any forum member can send you a Private Message within the forum system by clicking here:
Send Private Message to Margie

You'll see the message when you visit Marrowforums. You can reply by Private Message too and they'll see your reply when they visit Marrowforums. Only the two of you will see the messages so you can tell them your email address, phone number, or other information that way, or even have a private conversation without giving out any information at all.
2. Any forum member can send you email by clicking here:
Send email to Margie

You'll get the message by email and you don't have to visit Marrowforums to see it or to reply. You can share information by email.
For more details about how Private Messages and email work, see this section of the FAQ. If you'd still prefer to post your email address and/or phone number in the forums where only registered members can see them, please click here to send me a message about it and I'll help.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Myelo Dysplastic Syndrome Support Group Meeting: Central Georgia SASSI07855 Support Groups and Communities of Hope 3 Sun Apr 3, 2016 06:59 PM
San Francisco Bay Area California MDS Support Group Marrowforums Support Groups and Communities of Hope 10 Sun Feb 7, 2016 11:11 PM
San Antonio Texas LLS/Community of Hope Support Group Marrowforums Support Groups and Communities of Hope 1 Wed Jan 14, 2015 07:28 AM
Folsom California MDS Patient Support Group Marrowforums Support Groups and Communities of Hope 0 Mon Apr 22, 2013 11:56 AM
Puget Sound MDS Support Group Marrowforums Support Groups and Communities of Hope 0 Sat Jan 19, 2013 04:48 PM


All times are GMT -4. The time now is 08:44 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2019 Marrowforums.org