Home         Forums  

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

AA Aplastic anemia

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Jan 29, 2013, 09:55 AM
jhassen jhassen is offline
Member
 
Join Date: Jan 2013
Location: USA
Posts: 1
Anyone using Promacta?

I have failed ATGAM and rabbit serum. My doc wants to avoid a BMT if possible as I only have a 90% match. He has started me on Promacta. Anyone else have this experience?
Reply With Quote
  #2  
Old Wed Jan 30, 2013, 08:59 AM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 451
Hi Jhassen,
My husband has had great success using Promacta after being extremely transfusion dependent for a few years. Even after coming off of it due to his platelets getting high enough for concern of clots, his red cells as well as his platelets have continued to stay up.
I have gone into great detail about his Promacta journey under the "Clinical Trials" forum.
Please feel free to ask any questions you may have - either through the forums or my personal e-mail - shcalvert3@aol.com.
I wish you the best.
God Bless,
Sally
Reply With Quote
  #3  
Old Thu Jan 31, 2013, 06:44 AM
Janire Janire is offline
Member
 
Join Date: Apr 2011
Posts: 19
clonal evolution

My doctor told me that promacta could cause a clonal evolution in aplastic anemia turnig into MDS or leukemia. Does anybody know anything about it? How much time does it to be taken? It has to be taken forever or can it be a good and long treatment to put into remission aplastic anemia?
__________________
Janire, age 31, diagnosed AA september 2007; treated with ATG november 2007, no response; 2xATG april 2008, total remission..... RELAPSE and 3xATG in april 2011....now waiting for a response... not always easy. Http://anemiaaplasica.blogspot.com
Reply With Quote
  #4  
Old Thu Jan 31, 2013, 08:53 AM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 451
Hi Janire,
One of the concerns in the clinical trial for Promacta at NIH was an increase in blasts with MDS. My husband took it for about 4 months before coming off. It normalized his red cells and put his platelets over 100,000 so he had to stop taking it. Even after being off since 7/12, his platelets are in the 80,000's and his RBC is near normal. There has been no increase in blasts in his case.
Take care and God Bless,
Sally
Reply With Quote
  #5  
Old Thu Jan 31, 2013, 11:17 AM
tytd tytd is offline
Member
 
Join Date: Jul 2009
Location: Southeast, USA
Posts: 132
Promacta and AA

Hello Janire, If you do not mind wading through a technical medical journal you may want to read the published report of an NIH trial of Promacta in AA patients in the July 5, 2012 issue of the New England Journal of Medicine. I think about 40+% of refractory AA patients responded to it in that article and the ones that did were continued on it. The NIH probably have more up to date data now and perhaps an on-going trial that you could possibly access if you have not already started on it. If you search through the forums by putting in New England Journal of Medicine + Promacta into the marrowforums search box you can find a link to the article that Sally C. kindly provided in July 2012. Good Luck and I hope it works for you.
Sally C. , am so glad to hear that things are going well for your husband. Just goes to show you how clinical trials sometimes can be a lifesaver.
__________________
possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
Reply With Quote
  #6  
Old Thu Jan 31, 2013, 11:36 AM
Janire Janire is offline
Member
 
Join Date: Apr 2011
Posts: 19
Thank you for the information. I will search for it carefully to know what is happenig with that.
I am from Spain and here promacta is only given to people affected with lupus and when I asked for promacta to my doctor, she told me what I said above.
Maybe there are other reasons or in Spain this treatment is not approved and my doctor told me this like a excuse....
I dont know what to think....
__________________
Janire, age 31, diagnosed AA september 2007; treated with ATG november 2007, no response; 2xATG april 2008, total remission..... RELAPSE and 3xATG in april 2011....now waiting for a response... not always easy. Http://anemiaaplasica.blogspot.com
Reply With Quote
  #7  
Old Thu Jan 31, 2013, 11:44 AM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 451
Tytd,
Thank you for your kind words. And you are so right about clinical trials. Don is a living example. It took 6 months until finally going to NIH to get a diagnosis for Don. He entered the clinical trial for Campath and that eliminated his Trisomy 8 and I believe saved his life. But he was still very transfusion dependent for RBC's and platelets. Then he entered the Promacta trial and has been transfusion independent for almost 2 years.

Janire,
The way the US gets FDA approval for these drugs is through clinical trials like my husband has participated. Promacta is not yet an approved drug for MDS nor AA (I don't think). So it would have to be obtained through a clinical trial here. Do not know about in Spain.
Maybe you could access the article that Tytd referred to regarding AA/Promacta and show it to your doctor.
Best wishes and God Bless to you both,
Sally
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
Promacta an side effects to liver Missy D. AA 1 Tue Apr 21, 2015 10:34 PM
PROMACTA use out of the USA Relentless Against SAA Drugs and Drug Treatments 4 Wed Oct 29, 2014 02:19 AM
Promacta Approved for U.S. Treatment of Severe Aplastic Anemia Marrowforums News and Events 2 Thu Aug 28, 2014 02:07 PM
Promacta and MDS DianeD MDS 8 Tue Jun 22, 2010 12:15 PM
Promacta for Platelets knstone Drugs and Drug Treatments 13 Wed Dec 9, 2009 09:08 PM


All times are GMT -4. The time now is 12:19 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