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 Sat Mar 27, 2010, 12:44 PM
rose mcmillin rose mcmillin is offline
Member
 
Join Date: Dec 2009
Location: Fort Myers, Fl Lee Cnty
Posts: 46
when vidaza stops working

Hi everyone, My husband can't continue his Vidaza because of low platelets. What is our next step? It has been one month since his last treatment.Thanks for any input that you may have. I discussed promacta with his doctor but he wasn't too keen on the idea. Any suggestions? Please help.
__________________
Husband diagnosed 10/08 RAEB-2 Started Vidaza treatments in Jan 09 until now
Reply With Quote
  #2  
Old Sat Mar 27, 2010, 04:03 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
After Vidaza

Hi Rose,
You know there is only one drug approved in the US for MDS except Vidaza and that is Dacogen.

Then patients with the chromosome aberration 5q- can have Revlimid.

Other patients have good effect with the histone deacetylase inhibitors like Epival or Zolinza but these drugs are not approved for MDS.

If your husband had good effect when he was treated with Vidaza - that is less blasts and higher HGB - then he perhaps should continue with that drug. We ought to be more firm with our doctors about Promacta even if we not have seen the results from the trials with MDS patients. Your doctor maybe hesitates because he isn't used to the paper work with Promacta. Look what Kirby has written about how to get Promacta in the US.
Kind regards
Birgitta-A
Reply With Quote
  #3  
Old Sat Mar 27, 2010, 08:09 PM
rose mcmillin rose mcmillin is offline
Member
 
Join Date: Dec 2009
Location: Fort Myers, Fl Lee Cnty
Posts: 46
Thankyou, I will be more forceful with the doctor.
__________________
Husband diagnosed 10/08 RAEB-2 Started Vidaza treatments in Jan 09 until now
Reply With Quote
  #4  
Old Sun Mar 28, 2010, 11:20 PM
knstone knstone is offline
Member
 
Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
Promacta

Hi Rose,
PromactaCares.com can help you. This link describes the program
http://www.promactacares.com/dispense.html#p_1

Promacta is not approved for MDS, but it can be tried using the special program. A trial of Promacta for MDS patients is being planned but has not started yet.
You can call Promacta Cares to get information on how you might get it under a special arrangement.

Hope this helps.
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
Reply With Quote
  #5  
Old Mon Mar 29, 2010, 06:30 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Trials with Promacta in MDS patients

Hi Kirby,
Thank you for all info about how to get Promacta when you have MDS !

You know there are 2 trials in MDS patients:
http://clinicaltrials.gov/ct2/show/N...cta+mds&rank=1
and http://clinicaltrials.gov/ct2/show/N...cta+mds&rank=2

The first trial is really not in MDS patients since the patients should have more than 20% blasts in the bone marrow - in fact they have AML.

The second one has a study start date July 2009 and an estimated study completion date December 2010. Hope they will get the 30 patients they need soon!
Kind regards
Birgitta-A
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
Vidaza not working after 4 years Marksa25 MDS 1 Wed Aug 16, 2017 08:50 PM
What to do When the Vidaza Stops Working? mitch Drugs and Drug Treatments 4 Wed Mar 9, 2016 03:48 PM
When a BMT stops working. aprilgrape72 Tell Your Story 3 Fri Dec 2, 2011 11:21 PM
Vidaza working great so far mausmish Drugs and Drug Treatments 9 Wed Sep 8, 2010 07:57 PM
Vidaza not working Suzanne Drugs and Drug Treatments 5 Tue Dec 22, 2009 09:10 PM


All times are GMT -4. The time now is 07:36 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