Home         Forums  

Go Back   Marrowforums > Regional Discussions > Australia
Reload this Page Australians with bone marrow failure diseases
Register FAQ Search Today's Posts Mark Forums Read

Australia News and discussions specific to Australia and Australians

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Aug 9, 2013, 09:30 AM
Sarah H Sarah H is offline
Member
  
Join Date: Jul 2013
Location: Queensland, Australia
Posts: 7
Australians with bone marrow failure diseases
Searching for Australians with Aplastic Anaemia, any severity or other BMF disorders/diseases.
Looking for best way for us to band together for awareness and support
Reply With Quote
  #2  
Old Sat Aug 10, 2013, 11:52 PM
Glenda H Glenda H is offline
Member
  
Join Date: Feb 2013
Location: Rockhampton Queensland Australia
Posts: 48
I have MDS
Hi Sarah

I live near Rockhampton and have MDS which has affected my red blood cells, white blood cells and platelets. Since last Oct I've been dependent on transfusions (red blood cells) usually every 4 weeks. I am under a heamatologist who comes up here from Brisbane. I am on Exjade for Iron overload because of the transfusions. I am 58.
Reply With Quote
  #3  
Old Sun Aug 11, 2013, 01:10 AM
SLB SLB is offline
Member
  
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
Hi! I live in Brisbane & had a BMT on the 6th of March this year at the Royal. I had MDS that progressed to AML. I, too have had many transfusions but about 3 weeks ago for the first time since I was diagnosed in feb 2012, all my blood counts were in normal range!!!! (Hgb has been sitting at 115 for 3 weeks now)!! Not sure about for AA but I did participate in the telephone forums for MDS run by the leukaemia foundation.
__________________
Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
Reply With Quote
  #4  
Old Wed Aug 14, 2013, 05:36 AM
Sarah H Sarah H is offline
Member
  
Join Date: Jul 2013
Location: Queensland, Australia
Posts: 7
Hi guys
thanks for replying!
hopefully we can build a little Aussie community
Reply With Quote
  #5  
Old Wed Aug 14, 2013, 08:28 AM
BigMick BigMick is offline
Member
  
Join Date: Aug 2013
Location: Kellerberrin West Australia
Posts: 3
Aussie Blog
I have only joined this forum today but I am happy to participate in an Australian Forum. - Cheers BigMick
Reply With Quote
  #6  
Old Fri Aug 16, 2013, 07:37 AM
Cheryl C Cheryl C is offline
Member
  
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Hello fellow Aussies. I have MDS too and am very interested to join the group. Please let me know what you have in mind.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #7  
Old Thu Aug 29, 2013, 09:14 AM
Honeybun Honeybun is offline
Member
  
Join Date: Aug 2013
Location: Perth Western Australia
Posts: 90
Count me in.
__________________
Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
Reply With Quote
  #8  
Old Thu May 21, 2015, 11:39 PM
Sunny's Mummy Sunny's Mummy is offline
Member
  
Join Date: May 2015
Location: NEWCASTLE NSW AUSTRALIA
Posts: 1
Angry Sunny 3 years old
Hi

We are in Newcastle. We haven't been diagnosed yet. His bone marrow test was abnormal. Hypercellular bone marrow, mild cytopenias. 3 monthly blood tests.

Thanks
Fiona
Reply With Quote
  #9  
Old Sat Dec 29, 2018, 11:10 AM
Odedara_pankaj Odedara_pankaj is offline
Member
  
Join Date: Nov 2018
Location: Perth, Western Australia, Australia
Posts: 2
male from Perth.
Hi, I am male 32 from perth. I am diagnosed with AA and PNH in 2016. I am on Eculizumab for last more than 2 years.
__________________
Pankajji B Odedara
Reply With Quote
Reply

« Previous Thread | Next Thread »

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
Confused with Bone marrow report teo MDS 168 Mon May 5, 2014 10:20 AM
Supporting Students with Bone Marrow Failure Diseases Marrowforums Pediatrics 1 Mon Aug 2, 2010 02:03 PM
Second Annual Celebrity Soccer Challenge Benefits Bone Marrow Failure Diseases Marrowforums News and Events 1 Sat Jan 17, 2009 03:10 AM
Bone Marrow Failure Disease Research and Treatment Act Marrowforums News and Events 1 Sat Sep 13, 2008 01:20 AM


All times are GMT -4. The time now is 07:45 AM.

Marrowforums - Archive - Privacy Policy - Top - Contact

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