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 Sun Mar 17, 2013, 06:20 PM
Uk2013 Uk2013 is offline
Member
 
Join Date: Mar 2013
Location: London
Posts: 6
My cousin diagnosed with Aplastic Aneamia

Hi all I'm new to forums so forgive me if I'm a bit slow in responding as this is all new to me, my cousin aged 32 has been diagnosed with severe aplastic Aneamia
he has had a course of immunosuppressive drugs ATG which we just found out was unsuccessful, he has a sister who was not a match for bone marrow transplant and a brother who is only half a match, I would really be greatful for some advice, as we are all very concerned for him. The next course of action is to use his brother half Mach for transplant, has anybody else experienced this type of treatment, also to everybody else with this difficult condition I wish you all the best ,many thanks for reading this post
Reply With Quote
  #2  
Old Mon Mar 18, 2013, 03:48 AM
NLJabbari NLJabbari is offline
Member
 
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Hello UK2013! I'm no expert, but I believe that common protocol in the U.S. would be a second round of ATG (horse). I don't think half a match is a very good match for bmt, but not sure what your cousin's docs are planning for him. How long ago did he undergo the first ATG treatment? Did they wait at least 6 months for a response?

Sincerely,

Norma
__________________
06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
Reply With Quote
  #3  
Old Mon Mar 18, 2013, 04:19 AM
Uk2013 Uk2013 is offline
Member
 
Join Date: Mar 2013
Location: London
Posts: 6
Hi Norma many thanks for your response, the doctors will discuss
On 25 of this month what the next course of treatment will be
My concerns are that he has already had one course of atg
Which was not successful so what if he has another course
Which fails also I'm unsure as to why the doctors don't test his immediate family for a match like uncles cousins as he has a large extended family
I never thought such a condition could happen to someone so young
And pray he can overcome this, any further help advise would be helpful
Thank you
Reply With Quote
  #4  
Old Mon Mar 18, 2013, 04:24 AM
Uk2013 Uk2013 is offline
Member
 
Join Date: Mar 2013
Location: London
Posts: 6
It's was three months since the atg they did a bone marrow
Biopsy and confirmed the atg didn't work
Reply With Quote
  #5  
Old Mon Mar 18, 2013, 12:39 PM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 718
Hi UK2013,

Where is your cousin being treated? It would be unusual to see any improvement in the marrow at 3 months post-ATG. It is more typical to look for a rise in blood counts first, which can occur 3-9 months after ATG.

You may want to get a second opinion with an AA expert. Professor Marsh at Kings Hospital has been recommended on this forum.
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
Reply With Quote
  #6  
Old Mon Mar 18, 2013, 03:08 PM
Uk2013 Uk2013 is offline
Member
 
Join Date: Mar 2013
Location: London
Posts: 6
Ok thanks, he is being treated at kings hospital under professor marsh
They said they should see signs of recovery
After 3 months but have not, so they suspect it hasn't worked
just got to hope the transplant is more successful
Reply With Quote
  #7  
Old Mon Mar 18, 2013, 04:30 PM
NLJabbari NLJabbari is offline
Member
 
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Hello again. We didn't see a response till around the sixth month. Do you know if your cousin had Horse ATG or Rabbit ATG? It was my understanding at one point that European countries used Rabbit ATG as a first option. In the states it is believed that Horse ATG is a better option or at least that's the latest I've heard from my son's Hematologist.

If the doctor decides that a bone marrow transplant is the next best option, be sure to ask if the search for a MUD--Matched Unrelated Donor will be an International Search? It would be nice to find a 10/10 match.

BTW, do they know what caused your cousin's AA...is it Idiopathic (unknown cause)?
__________________
06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
Reply With Quote
  #8  
Old Mon Mar 18, 2013, 05:36 PM
Uk2013 Uk2013 is offline
Member
 
Join Date: Mar 2013
Location: London
Posts: 6
Hi once again thanks for the help and thanks for your info
The consultants said if no changes in blood response after 3 months then
Atg hasn't worked, I'm not sure why they have not waited longer
My cousins atg was diagnosed as idiopathic
Unkown cause, I just really hope he can find a really good match
Donor, why won't the consultants test immediate family?
Reply With Quote
  #9  
Old Mon Mar 18, 2013, 08:07 PM
ssdavi71416 ssdavi71416 is offline
Member
 
Join Date: Mar 2012
Location: Atlanta Georgia
Posts: 105
My response did not start until 4.5 months after ATG. My recommendation would be to keep taking the Cyclosporine while waiting for a BMT match. How old is your cousin? Depending on age they might not do another round of ATG and move right to BMT. Here is a great article written by the experts in the field.;

http://bloodjournal.hematologylibrar...1185.full.html
__________________
Scott 51 yr SAA 3/2012. PTL 7, ANC 200. ATG finished 4/9/2012. 2/4/2013. TX independent:; PTL 133, ANC 3300, Hgb 13.4.
Reply With Quote
  #10  
Old Tue Mar 19, 2013, 02:29 PM
Uk2013 Uk2013 is offline
Member
 
Join Date: Mar 2013
Location: London
Posts: 6
hi my cousin is 32 years old
Reply With Quote
  #11  
Old Tue Mar 19, 2013, 05:20 PM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 718
Quote:
Originally Posted by Uk2013 View Post
I'm unsure as to why the doctors don't test his immediate family for a match like uncles cousins as he has a large extended family
Hi Uk2013,

They don't test family other than siblings because the odds of them being a full match is about equal to the general population, and the cost of doing the genetic testing is high. Of course, the extended family could always join the marrow registry and than they will be included in the pool.

I hope your cousin's counts start to improve. Look for even slight changes as a positive sign...like increased time between transfusions.
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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
JUST diagnosed with Aplastic Anemia TASHMAC Questions and Answers 6 Tue Mar 27, 2018 09:09 AM
16yr old Cousin Diagnosed with AA thesubmitter AA 8 Fri Jul 17, 2015 04:14 PM
Aplastic Anemia Patient Diagnosed last June 2015 Cris L. Pediatrics 2 Wed Jul 8, 2015 09:35 AM
Family Member Diagnosed With Aplastic Anemia. Help? JustSomebody8 Questions and Answers 1 Mon Apr 7, 2014 08:23 PM
Linda R's Aplastic Anemia- newly diagnosed Robi1Knobi Tell Your Story 11 Mon Apr 23, 2007 12:29 PM


All times are GMT -4. The time now is 04:26 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