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Stories

From real patient stories to tips on living well, hear firsthand from people who have faced blood cancer.

We’ve also got the latest research and advocacy news, as well as stories from our wonderful fundraisers and donors. You can subscribe to our e-newsletters and event news here.

High schooler Megan faces biggest test yet

Megan Reid was about to begin her last two years of high school when she was diagnosed with a blood cancer.

  • Hodgkin lymphoma
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PBAC considering selinexor for a third time

For the third time, selinexor (Xpovio®) will be considered by the Pharmaceutical Benefits Advisory Committee (PBAC) at its November 2022 meeting for the treatment of relapsed/refractory (R/R) myeloma. 

  • Myeloma
  • Treatments and side-effects
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Selinexor illustration

Martin’s setting new records for remission and enjoying life while living with myeloma

During the 22 years Martin Boling has had myeloma, blood cancer of various types has affected four other members of his family too, not just him. 

  • Myeloma
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The Bolings at the Great Wall of China

Targeting DCAF as a novel treatment strategy for therapy-resistant myeloma 

Meet the research team developing a myeloma treatment with maximum efficacy and minimal side effects

  • Myeloma
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Lev Kats at Peter Mac

Nikita’s three now and in remission which is “truly a miracle”

When Nikita was born with leukaemia in August 2019 his parents were told he probably wouldn’t survive; his chances being only 4%. 

  • Acute lymphoblastic leukaemia
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Kolder family at the beach

Expert Series: Dr Michael Osborn discusses all aspects of acute lymphoblastic leukaemia

More than 80% of children newly diagnosed with acute lymphoblastic leukaemia (ALL) are successfully treated today – an achievement deemed by Dr Michael Osborn as “one of the true success stories of modern medicine”. 

  • Acute lymphoblastic leukaemia
  • Research
  • Treatments and side-effects
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Michael Osborn

Planned clinical trial offers access to new therapy for rare acute leukaemia

Professor David Curtis has focused his research on searching for new ways to treat early T-cell precursor acute lymphoblastic leukaemia (ETP-ALL) which he describes as “a nasty type of leukaemia”. 

  • Acute lymphoblastic leukaemia
  • Research
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Professor David Curtis

Expert Series: with Professor David Curtis

The ability to use haploidentical donors, or half matched donors, is the most important recent development in stem cell transplantation, says world leader in transplant research, Professor David Curtis. 

  • Acute lymphoblastic leukaemia
  • Research
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Curtis Group in 2022

Graham’s story highlights the need for blood cancer OCPs

Adelaide man Graham Lewis had two stem-cell transplants and was left with severe graft-versus-host disease. He believes the existence of OCPs would have greatly improved his quality of life.

  • Non-Hodgkin lymphoma
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MM24 clinical trial – an opportunity for George

Ten months after his diagnosis and having failed standard treatment, George Yiannakis is the first of potentially 12 Australians to go on the international MM24 clinical trial for AL amyloidosis.

  • Amyloidosis
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George and Patricia second wedding

AL amyloidosis Expert Series interview with Dr Hasib Sidiqi

We spoke to Dr Sidiqi about his specialising field of amyloidosis.

  • Amyloidosis
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Dr Hasib Sidiqi and Professor Morie Gertz

PBAC recommends daratumumab for newly diagnosed AL amyloidosis

Daratumumab (Darzalex®) could be the first ever therapy to be approved in Australia for AL amyloidosis.

  • Amyloidosis
  • Treatments and side-effects
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Daratumumab

Diagnosed with a rare blood cancer, Peter turned to online forums for support

Cast your mind back to 2019, and life pre-COVID. For 56-year-old Peter D'Onghia, that meant a relentless travel schedule with his job as an academic and medical journal publisher – something that led to a delay in following up on blood test results that were, as he puts it, "a little bit odd".  

  • Other blood cancers
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Peter had hairy cell leukaemia

Living with PV has become “a normal way of life” for Debbie

When Debbie McFarlane was diagnosed with the myeloproliferative neoplasm (MPN), polycythaemia vera (PV) in 2013, she didn’t realise it was a form of blood cancer.

  • Myeloproliferative neoplasms
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Debbie and Ian McFarlane

An antibody for myelofibrosis – “that’s a true discovery”

A new monoclonal antibody, discovered by accident by Adelaide researchers, could become the world’s first effective treatment for primary myelofibrosis (MF).

  • Myeloproliferative neoplasms
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Associate Professor Daniel Thomas

Expert Series: Prof. Wendy Erber – a tool predicting the potential progression of MPNs coming soo

Professor Wendy Erber and her research team in Western Australia are developing a monitoring tool they hope will identify MPN patients who will go on to develop leukaemia.

  • Myeloproliferative neoplasms
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Wendy Erber

New targeted treatment option available for Waldenström macroglobulinemia (WM) patients through PBS.

The Leukaemia Foundation has welcomed news that for the first time, a targeted treatment option will now be available for Waldenström macroglobulinemia (WM) patients through the Pharmaceutical Benefits Scheme (PBS).

  • Other blood cancers
  • Treatments and side-effects
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Terry’s ups and downs during 20 years living with CML

Terry Robson-Petch has been living with CML for 20 years.

  • Chronic myeloid leukaemia
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Terry Robson-Petch with his partner and daughter 

Expert series interview: Dr Naranie Shanmuganathan on CML

The greatest unmet need in CML is the ability to predict outcomes at the time of diagnosis according to Dr Naranie Shanmuganathan, a consultant haematologist at Royal Adelaide Hospital and SA Pathology.

  • Chronic myeloid leukaemia
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Dr Naranie Shanmuganathan

Regina’s new life is about making memories with her girls

The week before Regina Batten’s wedding, in August 2017, she was diagnosed with AML. She had just celebrated her 30th birthday and was about to marry the father of her three children.

  • Acute myeloid leukaemia
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Regina with her twins