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 Wed May 2, 2012, 11:41 PM
ixmnrs ixmnrs is offline
Member
 
Join Date: Feb 2012
Location: Toronto , Ontario , Canada
Posts: 7
How long did it take to HLA Type Siblings?

Hello everyone,

A little background...

My son was diagnosed with aplastic anemia after a severe nosebleed while he was fighting a viral infection. Since then, his pancytopenia has been persistent, WBC around 2, Platelets around 50, ANC between 500 and 1000 with Hg around 110-120 (Canadian numbers). Cellularity on BMB was around 20%. His counts have been pretty stable since; no transfusions, no treatments and only one more severe nosebleed a month after. His diagnosis is moderate Aplastic Anemia. A whole battery of blood tests and genetic tests (showed slightly short telomeres) have been negative, so no 'cause' yet but some results still pending.

Nonetheless they only arranged for HLA Typing (1 sister and us) 1.5 months later (Wasn't considered urgent as no treatment was required so I imagine it was somewhat pushed back) and it has been 4+ weeks now without an result. Is that somewhat par for the course when it comes to this type of HLA Typing? What were some of your experiences? The wait is just killing us, even though we are thankful things have been stable without treatment, especially reading the stories that most of you have endured. Thank you for sharing your experiences and knowledge!
Reply With Quote
  #2  
Old Thu May 3, 2012, 05:35 AM
SLB SLB is offline
Member
 
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
I am wondering the same thing. I am in Australia and my siblings' HLA blood tests were taken 2 months ago and we still haven't heard anything. However they did tell us we will only hear from them if there was a potential match.... when do we stop waiting? Hope you hear some good news soon
Reply With Quote
  #3  
Old Thu May 3, 2012, 08:13 AM
ixmnrs ixmnrs is offline
Member
 
Join Date: Feb 2012
Location: Toronto , Ontario , Canada
Posts: 7
Wow, 2 months! Yes, they said they would contact us directly if there was a match but only contact our doctor if there wasn't but neither of us have heard yet so we just keep waiting. I hope your results come soon.
Reply With Quote
  #4  
Old Thu May 3, 2012, 07:59 PM
edithr edithr is offline
Member
 
Join Date: Feb 2011
Location: 30 mi West of Cleveland
Posts: 86
I want to say it took about a week to find out that my daughter did not match my son. We all hate the waiting game. Especially when you're positive they know the answer and just haven't told you.

How long did it take to test his telomeres, and where did you get them tested at? That test took about a month I think, we went through repeat diagnostics in Canada.

I'm glad to hear your son is doing well, how old is he?
__________________
Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
Reply With Quote
  #5  
Old Thu May 3, 2012, 11:14 PM
ixmnrs ixmnrs is offline
Member
 
Join Date: Feb 2012
Location: Toronto , Ontario , Canada
Posts: 7
I assume that's where we had to send our tests to as well as they did say British Columbia and I think they're the only lab that does it. Telemore testing took a while (at least a month) and I'm not still sure they have all the results of the testing. Probably they sent for the basic procedure first, and then decided they needed a more detailed testing later. Nonetheless, we just know that they are a little short, but not DKC short if that makes sense. He's had a whole battery of tests to rule out a lot of congenital conditions which so far has been negative.

My son is 14. So far, he has been stable and to look at him, it's hard to believe that AA is even a possibility, but we're thankful. The scary part is the waiting, the uncertainty and the fact that our doctor has essentially said that in his experience, 2/3 of patients progress to SAA.

Thanks for your reply and I hope Eric is doing well.
Reply With Quote
  #6  
Old Fri May 4, 2012, 12:11 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi,

When I had my HLA typing done, it took *months* to get the results back. My siblings were matches.
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
  #7  
Old Fri May 4, 2012, 07:40 AM
squirrellypoo squirrellypoo is offline
Member
 
Join Date: Nov 2008
Location: London, UK
Posts: 458
Mine only took a couple of weeks, if I remember correctly, and that involved a bunch of international paperwork, because my brother was HLA matched in the States, who then sent the results over to the Anthony Nolan Trust in the UK for analysis/comparison against mine.

But we were all fairly certain he wasn't a match, as my parents thought they'd tried that in 1984...
__________________
36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
Reply With Quote
  #8  
Old Sat May 5, 2012, 09:42 AM
dfantle dfantle is offline
Member
 
Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
I have 4 siblings and we received the results within 1 week. This is in the US though. I'm wondering if the result is taking longer because it was marked as not urgent.

My telomere results also took 1 week (they're normal)

Best wishes,
__________________
Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
Reply With Quote
  #9  
Old Sat May 5, 2012, 03:23 PM
ixmnrs ixmnrs is offline
Member
 
Join Date: Feb 2012
Location: Toronto , Ontario , Canada
Posts: 7
Hi Dfantle

At this time, I'm not sure why it's taking too long, I don' knw if they marked it as not urgent. I'm hanging on to the hope that maybe my daughter was a possible match so they have to do a high resolution study to confirm? But, we're still in the dark right now. Thanks for your response and I hope you are doing well.
Reply With Quote
  #10  
Old Mon May 7, 2012, 12:08 PM
ixmnrs ixmnrs is offline
Member
 
Join Date: Feb 2012
Location: Toronto , Ontario , Canada
Posts: 7
Thank you for all your replies. We did find out the results today. His sister was not a match but I was and they are still waiting on some high resolution testing on the DQ gene.
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 Survey - How Long? Sue&Dave MDS 31 Sat Aug 29, 2020 06:48 PM
How long until blood type changes to donors ? vickij Transfusions and Iron Overload 11 Tue Jun 23, 2015 02:32 PM
New Intro (Warning Long Rambling Post) koda0317 Tell Your Story 3 Wed Oct 7, 2009 08:42 AM
Rare blood type causing a stumbling block for transplant MNladyslipper Transplants 9 Fri Jul 18, 2008 10:13 AM


All times are GMT -4. The time now is 02:16 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