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Navigating a rare blood disease as a mother of five: Fiona’s story

In May 2020, Fiona was diagnosed with Myelodysplastic Syndrome. Also known as MDS, it is a type of blood cancer that affects the production of normal blood cells in the bone marrow. Fiona shares what it was like to be diagnosed with a rare blood disease as a mother of five, wife and nurse, in the midst of the COVID-19 pandemic.

  • Myelodysplastic syndromes
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Fiona McWhirter

Clinical trial for high-risk MDS tests new drug combination 

A Phase I investigator-driven clinical trial, which is ready to recruit its first participant, gives Australian patients with high-risk MDS access to two new oral drugs. 

  • Clinical trials
  • Myelodysplastic syndromes
  • Research
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Don had a stem cell transplant at 70 and says “exercise helped”

Don Hayes had an allogeneic stem cell transplant days before his 71st birthday.

  • Myelodysplastic syndromes
  • Research
  • Treatments and side-effects
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Jane’s had three different cancer diagnoses in two years

  • Acute myeloid leukaemia
  • Myelodysplastic syndromes
  • Treatments and side-effects
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Jane Alder and Violet

Expert Series: Prof. John Pimanda – lots of work is needed to improve long-term outcomes for MDS

  • Interviews with experts
  • Myelodysplastic syndromes
  • Treatments and side-effects
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Diagnosed with MDS, AML, then MDS again

Tony Wakely’s diagnosis with MDS quickly transformed to AML, which he beat with a transplant. But a year later, he was shocked to find out his MDS had come back.

  • Acute myeloid leukaemia
  • Myelodysplastic syndromes
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Tony and Karen Wakely

International precision medicine clinical trials recruiting

Two new international clinical trials are expected to improve access to new therapies for Australians with MDS as part of the Leukaemia Foundation’s Trials Enabling Program (TEP).

  • Clinical trials
  • Myelodysplastic syndromes
  • Research
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AMLM23 Principal Investigator, Professor Paula Marlton

PBAC update on new MDS & CMML treatment

The Leukaemia Foundation provided consumer comments to the Pharmaceutical Benefits Advisory Committee (PBAC) in relation to Otsuka Australia Pharmaceutical’s resubmission for decitabine and cedazuridine (Inqovi®) for high-risk MDS and CMML.

  • Myelodysplastic syndromes
  • Treatments and side-effects
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CMML under microscope

Aim of first-ever CMML study – to improve survival

A lot of ‘world firsts’ are involved in an Australian clinical trial that is taking a precision medicine approach to treating CMML, a neglected and serious rare blood cancer that is poorly understood.

  • Clinical trials
  • Myelodysplastic syndromes
  • Myeloproliferative neoplasms
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Dan Thomas and CMML trial team

Expert Series: Dr Devendra Hiwase – more research needed for greater insight into MDS

Dr Devendra Hiwase thinks every patient with this rare form of blood cancer should have molecular profiling.

  • Interviews with experts
  • Myelodysplastic syndromes
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Dr Devendra Hiwase