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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.

Access to best practice needed to reduce blood cancer mortality

Patients understand that clinical best practice care begins with an accurate and timely diagnosis.

  • Advocacy and policy
  • AML
  • Myeloma
  • Treatments and side-effects
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Access to best practice needed to reduce blood cancer mortality

Jennifer was diagnosed with myeloma at 27 years old

Jennifer Marx shares insight into being diagnosed with myeloma at almost 27 years old - a condition far more prevalent in older people. Jennifer shares how she navigated the healthcare system, managed treatment and relationships, and her experience having two autologous transplants.

  • Myeloma
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Jennifer Marx

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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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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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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From dialysis to blood cancer: Robert’s story

Northern Territory local Robert Smith had been living on dialysis for 12 years when he was diagnosed with myeloma. Robert discusses the importance that the support of his wife, Jo was in his journey. He takes us through his story — from diagnosis, to what it was like to travel to Adelaide for life-saving treatment and his recovery.

  • Myeloma
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Talking Blood Cancer

First CAR T-cell trial for myeloma a success for Andrew

Andrew was the first person in Western Australia to have the life-changing therapy.

  • Clinical trials
  • Myeloma
  • Treatments and side-effects
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Andrew and Vivienne celebrating

Ann’s finally in a happy place after 22 years living with myeloma

Ann Bruce shares the story of her diagnosis, in her own words.

  • Myeloma
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Ann Bruce with baby Byron

MSAC advising on cilta-cel CAR T-cell therapy for myeloma

Ciltacabtagene autoleucel (cilta-cel), is being appraised by the Medical Services Advisory Committee (MSAC) for listing on the Medicare Benefits Schedule. 

  • Myeloma
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Expert Series: Dr Piers Blombery on genomic testing

Dr Piers Blombery explains the basics of molecular testing which informs the treatment of blood cancer.   

  • Hodgkin lymphoma
  • Interviews with experts
  • Myeloma
  • Non-Hodgkin lymphoma
  • Research
  • Treatments and side-effects
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Dr Piers Blombery

Expert Series: AProf. Michael Dickinson discusses CAR T-cell therapy

Associate Professor Michael Dickinson says CAR T-cell therapy is a 'revolutionary step forward'.

  • Acute lymphoblastic leukaemia
  • Chronic lymphocytic leukaemia
  • Hodgkin lymphoma
  • Interviews with experts
  • Myeloma
  • Non-Hodgkin lymphoma
  • Research
  • Treatments and side-effects
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A/Prof. Dickinson enjoying gelato with his daughters in Melbourne

Faye’s myeloma journey: “Cancer? What cancer?”

To mark Myeloma Awareness Month, Faye Johnsen shares her inspiring approach to living with the incurable blood cancer.

  • Myeloma
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Faye Johnsen

Janice has “been just so lucky” over the 12 years she’s had myeloma

Janice says she "wouldn't be here" had she been diagnosed two years earlier.

  • Myeloma
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Jan Watt at her 50th

Expert Series: Professor Miles Prince – the challenges, the treatments, the future of myeloma

Not only is Professor Miles Prince “a true believer in CAR T-cells”, he believes they may even have the potential to cure myeloma one day.

  • Interviews with experts
  • Myeloma
  • Research
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Prof. Miles Prince presenting

Identifying high-risk smouldering myeloma to improve patient outcomes

Dr Melissa Cantley hopes that those who have this pre-canerous condition will be able to be tested to understand their risk of developing myeloma.

  • Myeloma
  • Research
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Dr Melissa Cantley in the lab

PBAC update on two myeloma drugs

These two myeloma drugs were not recommended for listing on the PBS.

  • Myeloma
  • Treatments and side-effects
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Elotuzumab

Same cancer, same drug but our access to treatment was anything but consistent

They’re three women all battling an incurable type of blood cancer, but Neda, Nikki and Shirley have felt hardship in very different ways.

  • Myeloma
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Neda Masters

Daratumumab – first new myeloma agent PBAC-recommended in years

The drug has received a positive recommendation for PBS listing.

  • Advocacy and policy
  • Myeloma
  • Treatments and side-effects
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Darzalex

Shirley’s “so well” on her latest treatment – daratumumab

Shirley Irwin has had radiotherapy and two transplants, had surgery, five different lines of treatment, and relapsed twice.

  • Myeloma
  • Treatments and side-effects
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Bruce and Shirley Irwin on the beach

Research aims to improve QOL by decreasing treatment toxicity

Kate Vandyke is leading exciting research examining whether a new inhibitor can be used to prepare myeloma patients for therapies and increase their efficacy.

  • Myeloma
  • Research
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Kate van Dyke