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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.

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

A tool predicting the potential progression of MPNs – coming soon

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

Expert interview with Dr Cameron Curley on transplantation and CAR-T therapy

Dr Cameron Curley describes CAR T-cell therapy as “arguably the biggest breakthrough in the treatment of many blood cancers in the last decade”. 

  • Acute myeloid leukaemia
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Dr Cameron Curley

Innovative new international trial for relapsed paediatric ALL opens soon

A clinical trial, due to open in mid-2022, will give young people access to two promising new ALL drugs.

  • Acute lymphoblastic leukaemia
  • Research
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Illustration of a microscope, test tubes, and clipboard

Phil’s potential melanoma turned out to be CLL

Ongoing fatigue was the symptom that prompted Phil Nicholls to have his first medical assessment in years and it resulted in his diagnosis with chronic lymphocytic leukaemia (CLL). 

  • Chronic lymphocytic leukaemia
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Phil and Cheryll Nicholls

Expert interview: Professor John Seymour

Find out why the clinical haematologist is dedicating his life to CLL.

  • Chronic lymphocytic leukaemia
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Professor John Seymour

Patients retain remission for 10+ years after CAR T-cell therapy

It’s 10 years since the first CLL patients were treated with CAR T-cell therapy and they are still in remission.

  • Chronic lymphocytic leukaemia
  • Treatments and side-effects
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Illustration of various treatments, pills, medicines

The fear, worry, and relief of having and recovering from COVID-19

In March 2022, member of the Blood Cancer Taskforce and Cancer Australia's Advisory Council Deborah Henderson found out she had COVID-19. Here, she shares her first-person narrative of that experience.

  • Chronic lymphocytic leukaemia
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Deborah Henderson

Personal grief rituals

Personal grief rituals are those loving activities that help us remember our loved ones and give us a sense of connectedness, healing, and peace. 

  • Grief and loss
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Martin Connah with his memorial ring

Grandparents – among the forgotten grievers

Some words by Certified Thanatologist, author, and lecturer Helen Fitzgerald.

  • Grief and loss
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Grief illustration

Martin misses his wife “each and every day”

Martin supported and cared for her during her final 10 years, following her diagnosis with myeloma – a journey that was challenging and long.

  • Grief and loss
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Linda and Martin Connah with ice cream