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Real stories

Stories from people living with blood cancer, their family, carers, and friends; plus research and advocacy news.

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Katrina’s five-year delay in diagnosis was followed by a further wait for access to treatment.

Katrina Richards struggled to receive her blood cancer diagnosis.

  • Treatments and side-effects
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Katrina Richards sits alone in her home.

Support for submission to MSAC for MRD testing reimbursement in ALL

  • Acute lymphoblastic leukaemia
  • Treatments and side-effects
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Dr Peter Diamond

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.

  • 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

Diagnosed with leukaemia as a newborn

Zoe Li was a healthy baby when she was born, but five weeks later her parents were told the shocking news… she had leukaemia.  

  • Acute lymphoblastic leukaemia
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Li Family

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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Venetoclax moves us closer towards zero lives lost to blood cancer

  • Advocacy and policy
  • Research
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Treatment

Expert interview: Professor Andrew Perkins on MPN

It’s emerging in all cancers, but particularly in the MPNs, that “genomics is everything” according to Professor Andrew Perkins, an expert in myeloproliferative neoplasms (MPN).

  • Myeloproliferative neoplasms
  • Research
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Andrew Perkins and grandson Harry

Sharon’s 30 years living with MPN

Diagnosed with PV and ET at the age of 18, Sharon was having treatment when she fell pregnant with the first of her three healthy children in 2000.

  • Myeloproliferative neoplasms
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Sharon MacIntyre at the market

Expert Series interview with Noemi Horvath on amyloidosis

Noemi Horvath is a highly reputed consultant haematologist at Royal Adelaide Hospital who has dedicated most of her life to her work and her special interest has long been amyloidosis.

  • Amyloidosis
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Dr Noemi Horvath with Dr Simon Gibbs, Assoc. Prof. Peter Mollee, the evening’s entertainer, Dr Fiona Kwok, Noemi Horvath, and Pat Neely

Sue’s living with the uncertainty she’s counselled others about

When Sue was diagnosed with a blood cancer, she found herself living through experiences she had discussed in one of her talks, This is Not the Life I Ordered.

  • Amyloidosis
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Sue McConaghey at the Chicago Art Gallery

PBAC considering 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

David’s in remission after compassionate drug access

David’s AL amyloidosis is in remission following compassionate access to daratumumab.

  • Amyloidosis
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David and Kathy Boyle with Sam

New international trial for amyloidosis

In a first-ever Australian-French collaboration, an exciting new clinical trial, due to open before Christmas, will give Australians with relapsed or refractory AL amyloidosis access to a new drug combination. 

  • Amyloidosis
  • Treatments and side-effects
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Illustration of various treatments, pills, medicines

Helen’s steps to a gift in Will

Helen has no idea how many kilometres she walked with her beloved pooch Prinnie for over 15 years collecting for the Leukaemia Foundation Doorknock campaign. But she does know every step was worth it to help save the lives of children with blood cancer – like her young friend, Rachel, who was diagnosed with leukaemia in 1991.

  • Acute lymphoblastic leukaemia
  • Gift in Will
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Will’s first Father’s Day after beating blood cancer

After beating blood cancer and becoming a first-time dad, Will decided to take care of his mental health.

  • Acute lymphoblastic leukaemia
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Will with his wife Sarah, holding their son Leo

The scary reality: blood cancer can affect anyone at any time

When Hayley Bugno was diagnosed with blood cancer only a year after having her third baby, she was confronted with the ‘scary reality’ that the disease does not discriminate and can strike when least expected.  

  • Acute myeloid leukaemia
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Hayley Bugno - feature

Rare blood cancer claims the life of ‘Island Child’ Benji 

Living a peaceful and idyllic life on tropical Christmas Island, the Kentwell family could never have anticipated the pain blood cancer could bring to their lives.  

  • Other blood cancers
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Benji Kentwell - feature

Venetoclax received PBAC recommendation for AML

The 'miracle drug' was among eight blood cancer treatments recommended by the PBAC at its July 2021 meeting.

  • Acute myeloid leukaemia
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Expert Series: Dr Ilaria Pagani talks treatment-free remission in CML

Dr Pagani has a vision for a personalised approach to treatment-free remission in CML

  • Chronic myeloid leukaemia
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Dr Ilaria Pagani in the lab