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  #1  
Old Fri Aug 9, 2013, 09:30 AM
Sarah H Sarah H is offline
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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
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  #2  
Old Sat Aug 10, 2013, 11:52 PM
Glenda H Glenda H is offline
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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.
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  #3  
Old Sun Aug 11, 2013, 01:10 AM
SLB SLB is offline
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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.
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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.
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  #4  
Old Wed Aug 14, 2013, 05:36 AM
Sarah H Sarah H is offline
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Join Date: Jul 2013
Location: Queensland, Australia
Posts: 7
Hi guys
thanks for replying!
hopefully we can build a little Aussie community
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  #5  
Old Wed Aug 14, 2013, 08:28 AM
BigMick BigMick is offline
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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
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  #6  
Old Fri Aug 16, 2013, 07:37 AM
Cheryl C Cheryl C is offline
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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.
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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.
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  #7  
Old Thu Aug 29, 2013, 09:14 AM
Honeybun Honeybun is offline
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Join Date: Aug 2013
Location: Perth Western Australia
Posts: 90
Count me in.
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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.
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  #8  
Old Thu May 21, 2015, 11:39 PM
Sunny's Mummy Sunny's Mummy is offline
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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
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  #9  
Old Sat Dec 29, 2018, 11:10 AM
Odedara_pankaj Odedara_pankaj is offline
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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.
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Pankajji B Odedara
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