People with a rare type of blood cancer often experience fatigue that is debilitating, distressing and profoundly affects their lives, new Peter Mac-led research has revealed.

Myeloproliferative neoplasms, or MPNs for short, are cancers that begin in the bone marrow and change the thickness of your blood.

Around 650 Australians are diagnosed with an MPN each year, making them a relatively rare form of blood cancer.

Fatigue is often reported as the most common symptom people with an MPN experience, yet very little was known about how it affects their lives.

"The aim of this research was to delve deeper into the impact fatigue is having on the everyday lives of people diagnosed with MPNs," said Ashleigh Bradford, the lead author on the study that was published in Cancer Reports last month.

"We hope this will lead to greater understanding for those people experiencing this symptom and for the health professionals who treat them."

Qualitative data from the research revealed how fatigue significantly affects people's ability to carry out the normal daily life tasks, including catching up with friends and family, and contributing to their community.

"For example, participants spoke about how they only had enough energy to do one thing each day such as a medical appointment, leaving them feeling isolated and debilitated," Ms Bradford said.

For co-author Ken Young, who both lives with an MPN and is a founding member of patient-led advocacy group MPN Alliance Australia, this qualitative study is important for the voice it's given to patient experience.

"The opportunity for patients to share their lived experiences is an inclusive step for many to address the alienation that fatigue causes," Mr Young said.

It will also help the health professionals treating people with MPNs, said study senior author Dr Elizabeth Pearson.

"Our research participants commonly told us they felt their fatigue significantly restricted their capacity to do things, but it was largely ignored by their health professionals," Dr Pearson said.

"Describing participants' experiences in a cancer journal can help them, and the wider MPN community they represent, to feel they are not alone and their experience is valid.

"Secondly, it gives health professionals a better understanding of fatigue in MPNs, and suggests how they can support their patients."

Image credit: Zoë Gayah Jonker

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Peter MacCallum Cancer Centre is a world-leading cancer research, education and treatment centre and Australia’s only public health service solely dedicated to caring for people affected by cancer.

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