Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Feb 22, 2012, 06:11 PM
djopierce djopierce is offline
Member
 
Join Date: Dec 2011
Location: Maryland
Posts: 6
Need suggestions for Dr in Dallas, Tx

Hi, my father, age 69, was diagnosed with MDS in November. It has been a roller coaster ride, he just spent a month in the hospital with pneumonia after his first round of Vidaza. While there, they now tell us the Vidaza was wrong treatment because he has hypo plastic MDS. Was given cyclosporine in hospital as well as neupogen and danazol. Was finally released with an rx for the cyclosporine and home health nurse. After almost three weeks, he still did not have his cyclosporine because the doctor had to approve it or something with the insurance company. we relentlessly called the dr's office and pharmacy, both told us they were waiting for something from the other! Now, he has been hospitalized again because his red cells have fallen too low. Platelets are low too but not dropping as fast as they were before. He was off the cyclosporine too long i think. I am not sure his doctor is experienced with MDS and I don't feel that they care. We need some suggestions please for a treatment center in Dallas area. I would love to take him to MD Anderson, but he doesnt want to travel that far. He may have no choice soon.
__________________
Dad-age 69, MDS RCMD, trisomy 8, diagnosed 12/13/2011, first round of Vidaza complete
Reply With Quote
  #2  
Old Wed Feb 22, 2012, 07:16 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by djopierce View Post
Hi, my father, age 69, was diagnosed with MDS in November. It has been a roller coaster ride, he just spent a month in the hospital with pneumonia after his first round of Vidaza. While there, they now tell us the Vidaza was wrong treatment because he has hypo plastic MDS. Was given cyclosporine in hospital as well as neupogen and danazol. Was finally released with an rx for the cyclosporine and home health nurse. After almost three weeks, he still did not have his cyclosporine because the doctor had to approve it or something with the insurance company. we relentlessly called the dr's office and pharmacy, both told us they were waiting for something from the other! Now, he has been hospitalized again because his red cells have fallen too low. Platelets are low too but not dropping as fast as they were before. He was off the cyclosporine too long i think. I am not sure his doctor is experienced with MDS and I don't feel that they care. We need some suggestions please for a treatment center in Dallas area. I would love to take him to MD Anderson, but he doesnt want to travel that far. He may have no choice soon.
Doctor Collins will be speaking at the AAMDS patient conference in Dallas in September.

http://www.utsouthwestern.edu/fis/fa...t-collins.html
__________________
Dallas, Texas - Age 81 - 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
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
Any suggestions for cough? Al's Wife MDS 6 Thu Aug 23, 2012 10:44 AM
Walk Information: San Antonio, TX, March 2012 Marrowforums San Antonio 2 Wed Mar 21, 2012 12:47 PM
One-day Patient Conference in Dallas, TX, September 22, 2012 Marrowforums News and Events 0 Sun Jan 29, 2012 02:58 PM
Dallas Area Support Groups penni1 Your Local Area 0 Thu Mar 8, 2007 07:18 PM


All times are GMT -4. The time now is 05:51 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, 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 © 2006-2020 Marrowforums.org