Thrombosis awareness

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Thrombosis awareness is relevant for everyone, and especially for MPN patients. It is provided courtesy of the International Society on Thrombosis and Haemostasis (ISTH).  The ISTH established World Thrombosis Day as 13 October, ‘to draw attention to a global health threat that is often overlooked: thrombosis, or blood clots.’

The ISTH explains that ‘Every year 1 in 4 people worldwide die from conditions related to thrombosis. Blood clots are the underlying cause of the top three cardiovascular killers: heart attack, stroke and venous thromboembolism (VTE). Yet most people do not know the signs, symptoms or risk factors.’

We believe the infographics below are of particular value in highlighting some important, relevant information for MPN patients.

Infographic about thrombosis risk factors

Infographic explaining thrombosis types

Please note that heart attack symptoms can be different for women.
To find out what they are see HERE

infographic of women's heart attack symptoms

Many more specific infographics are available, including in several languages, from the World Thrombosis Day website.

 

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Polycythemia vera – new way of monitoring disease activity?

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A European study has just been released suggesting a new way to monitor polycythemia vera patients’ disease activity.

Titled ‘Neutrophil-to-Lymphocyte ratio as surrogate for JAK2V617F suppression and event-free survival in polycythemia vera’ it explores the value of using neutrophil-to-lymphocyte ratio (NLR) as a means of monitoring PV disease activity.

The study used data from three of the largest PV clinical trials, and evaluated the impact of PV therapies on the neutrophil-to-lymphocyte ratio – and then its relationship with molecular response (reduction in allele burden) and clinical outcomes.

The full article is free to access HERE.

Conclusion

‘This study highlights the distinct effects of Hydroxyurea and Ropeg on leukocyte-derived biomarkers in PV.  While both reduce leukocytosis and neutrophilia -key thrombosis drivers- Ropeg also normalizes NLR, lowers JAK2V617F VAF, and better preserves lymphopoiesis, suggesting potential to reduce thrombosis and modify disease progression.  These findings support NLR as a predictive biomarker, reinforcing the importance of inflammation-targeted strategies in PV management.’

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MPN Education Symposium in Perth and online

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Publicity flyer for MPN Education Symposium 25 October 2025

‘What does optimal management of MPNs look like in 2025?’

MPN AA, in partnership with the University of Western Australia School of Biomedical Sciences and Royal Perth Hospital, is proudly presenting an MPN Education Symposium.

The symposium will be all day on Saturday 25 October, WA time.
It is free to attend in person or online.

Who should attend?
MPN patients, family members, carers, friends, clinicians, researchers and people interested in learning more about MPNs are welcome to attend.
There will be opportunities to ask questions and meet and chat with other participants throughout the day.

FAQs are available on the Symposium registration page.

And for more details, including the Event program, see this page  or use the QR code above. 

Please register to attend either in person, or online. 

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Atrial fibrillation and MPN patients with Jak2 mutation

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A recently published research article may be of interest to MPN patients with the Jak2 mutation. It is titled ‘Incidence, Outcomes and Risk Factors for Atrial Fibrillation in Patients With JAK2V617F-Positive Myeloproliferative Neoplasms‘. The article was published in Cancer Medicine in July 2025.

The researchers retrospectively analysed clinical profiles of 439 Chinese MPN patients with the Jak2 mutation from several hospitals in China between 2017 and March 2025. The researchers’ intention was to consider specific risk factors for atrial fibrillation (AF) in the MPN patient population which they felt “have not been fully elucidated”.

The researchers concluded that:

  • “atrial fibrillation was significantly associated with higher risks of stroke and mortality in patients with JAK2V617F-positive MPN.
  • TET2 mutation and increased IL-1ß were independent risk factors of AF in patients with JAK2V617F-positive MPN.”
  • They also noted that “interferon-alfa and ruxolitinib were associated with improved AF-free survival in patients in the high-risk group.”

The paper is freely available to read in full HERE.

 

 

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International review series on MPNs published

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The April 2025 edition of Haematologica features an excellent review series on MPNs.

The authors of the introduction paper to the series, Australia’s Drs Steven Lane and Yin Yuan, explain that ‘the review series is not designed to be a definitive review of all aspects of MPN biology and treatment. Rather, we have selected a few key topics of particular interest to the field that have been informed by recent advances in basic or clinical research’.

In addition to the paper from Drs Steven Lane and Yin Yuan, paper no 4, ‘Pathogenesis and management of high molecular risk myeloproliferative neoplasms’ also features two Australian coauthors, haematologist and researcher Dr Victoria Ling and researcher Dr Megan Bywater.

The papers are all free to access and linked below:

  1. Prevention, diagnosis and management of myeloproliferative neoplasms: an introduction to a review series,
  2. Evolution of myeloproliferative neoplasms from normal blood stem cells,
  3. ‘Clinical and laboratory approaches to target and eradicate early disease-initiating stem cells’:
    Paper is titled New approaches to standard of care in early-phase myeloproliferative neoplasms: can interferon-a alter the natural history of the disease?,
  4. Pathogenesis and management of high molecular risk myeloproliferative neoplasms,
  5. ‘Strategies to prevent or treat the devastating clinical consequence of AML arising from antecedent MPN, also known as blast-phase MPN’. Paper is titled Prevention and treatment of transformation of myeloproliferative neoplasms to acute myeloid leukemia.

 

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Diet, exercise and myelofibrosis: a holistic approach

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The Medscape organisation in the US produces podcasts about Myelofibrosis.

If you’d like to listen to the podcasts or even just read the transcripts, it’s simple to log in via Google, Apple or to set up a log in and password.

The most recent podcast (March 2025) discussing diet and exercise is informative and helpful.

If you’re interested, you can access the information HERE: Diet, Exercise, and Myelofibrosis: A Holistic Approach

This MPNAA website also has a wealth of information about LIVING WELL WITH AN MPN.

 

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ASH 2024 overview podcast from Claire Harrison from the UK

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Haematologist Claire Harrison from Guys and St Thomas’ Hospital in the UK is one of the world’s leading MPN experts.

In this podcast she provides an overview of some of the MPN presentations from the American Society of Hematology meeting (ASH) in December 2024.

Yet again, the amount of research into MPNs here in Australia and world-wide is extremely reassuring for patients.

The podcast can be accessed HERE.

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February 2025 MPN Education Foundation patient conference videos

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Every two years the MPN Education Foundation hosts a wonderful patient conference in Scottsdale Arizona, with some of the most distinguished MPN expert presenters. The conference is titled the Joyce Niblack Memorial Conference, and is hosted by the Mayo Clinic.

We are very fortunate to be able to view the conference video presentations and slides.

Here is a list of presenters and topics:

Jyoti Nangalia – MPN Molecular Biology

Rupali Bhave -Managing ET in 2025

Raajit Rampal – Managing PV in 2025

Naveen Pemmaraju – Managing ET in 2025

Ruben Mesa – Guidelines & Gaps in MPN

Jeanne Palmer – Transplants in MPN for 2025

Marina Kremyanskaya – New Drugs for PV

John Mascarenhas – New Drugs for MF

Angela Fleischman – Nutrition & Complementary Approaches for MPNs

Jean-Jacques Kiladjian – Long Term Outcomes of Interferon in MPNS

Steffen Koschmieder – Inflammation in MPNs

Susan Leclair – Learning about my Labs: An MPN Patient Guide

 

 

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2024 ASH MPN highlights with Dr Ruben Mesa

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Courtesy of Ann Brazeau of MPN Advocacy and Education International, here is a wonderful summary video of the MPN highlights from the December 2024 American Society of Haematology (ASH) meeting provided by Dr Ruben Mesa.

Watch the video HERE

 

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More benefits of exercise

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Happy new year to MPN patients and their families.

Over a year ago, we publicised an article from Australian oncologist and author Dr Ranjana Srivastava, about the benefits of exercise.  Dr Srivastava stated that  ‘in addition to standard [cancer] treatments, exercise really is one of the best daily “pills” cancer patients can take to improve their life expectancy. Indeed, if exercise could be marketed as a pill, it would be an outright blockbuster.‘

In the last few days, the MPN AA has seen some further information and evidence about the benefits of exercise…. and because it’s a new year, we thought you might appreciate being inspired by them.

  1. Some practical easy to implement advice  from The Conversation
    ‘Five ways to make your daily walks even more beneficial’. 
  2. Recent findings from researchers at Stanford university, posted by MPN haematologist and researcher Dr Ann Mullally. It is a video interview (with transcript) from PBS News in the US.
    How exercise may be the ‘most potent medical intervention ever known’.

Caution: Haematologists and GPs still caution however to be sure to check with your GP and haematologist before launching on any new exercise program and start slowly and gently if you haven’t exercised before or not for some length of time.

Best wishes from the MPN AA for a wonderful and healthy 2025.

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