International review series on MPNs published

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.

 

Share to:

Diet, exercise and myelofibrosis: a holistic approach

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.

 

Share to:

ASH 2024 overview podcast from Claire Harrison from the UK

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.

Share to:

February 2025 MPN Education Foundation patient conference videos

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

 

 

Share to:

2024 ASH MPN highlights with Dr Ruben Mesa

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

 

Share to:

More benefits of exercise

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.

Share to:

MPN Horizons meeting 6-8 September 2024 Warsaw – A personal reflection from Sharon MacIntyre

 

Well let’s just say it was an honour to attend the MPN Horizons conference this year.  There was representation from MPN specialists, many MPN advocacy groups, PV, ET & MF patients, pharmaceutical companies and more!  The title “Shifting the treatment paradigms of MPN” was very apt. Since I first attended in 2017, sponsors have grown from 3 to now 11! And patient advocacy groups now include Thailand, Korea, and other nations which previously were not represented.  It is such a growing global family to address MPN needs.

The almost 70 participants in Warsaw, Poland were from an amazingly geographically spread of 26 countries, including Australia, India, Chile, to Europe, America and Asia! All were very vocal in sharing new developments for MPN from research to trials, to advocacy and patient stories. All sharing a key purpose – to make life better for MPN patients.

Before we dived into a massive 3 day program, it was refreshing to attend a breakfast session where Pharma was the lead and seemed genuinely keen to collaborate and bridge the access barrier different countries and patients in need have. The session was called “Navigating the Path to Equal and Equitable Care” to discuss the most important barriers for MPN patients.  I learnt a lot, particularly helpful that there is a special consideration element to access which can be sought with the Pharma company directly for review/access to medications.

This was the third time I have attended Horizons and as a highlight for myself being diagnosed at 18 years of age. I was particularly impressed with the inclusion of a session solely for young MPN patients by Alice Watson from UK. Under the auspices of MPN Voice she has started a group for under 40’s MPN patients to ask questions, address issues such as study/work life balance, starting a family and pregnancy, long term MPN and progression.

The sessions from world leading specialists were very informative.  Dr Claire Harrison spoke on state-of-the-art news for Myelofibrosis – including the new prognostic model; how there are more options available for lower risk MF patients; and how the success of Haplo transpants as an option could be explored. A haematologist from Germany, Dr Susanne Isfort, talked about the 3 common MPNs and the drugs she typically uses to treat them, and about data showing that interferon in young patients may be looked at as an option to stop MF progression.

Jon Mattias from MPN Voice presented a session on a great new application “Health Unlocked” which is in development. This app tracks patient symptoms and data that hopefully could be useful for medical appointments and could be integrated into a wearable device.  This type of app could be rolled out globally – but more needs to happen on 3rd party permissions and how to protect personal data.

Dr David Ross from Adelaide Australia, spoke on the differences in an individual’s height and gender etc which often isn’t taken into consideration in treating patients. For example, spleen size, depth and volume in a female 5’2 and a man 6’2 can be completely different in what is considered large! He felt spleen volume is more important than just length – something I had never heard of before. There were pictures from Dr Wendy Erber’s lab in Western Australia on machine learning for precise fibrosis scoring which was very interesting.

Elena Greschner from Austria talked about fatigue and how around 80% of MPN patients suffer fatigue.  Yet only about 30% of haematologists ask their patients about fatigue. She stressed the fact that Quality of Life is important (as well as the blood cell numbers). Dr Patrick Harrington mentioned patient data in his MPN research that showed a fifth of MPN patients can only work reduced hours or need to stop work early before retirement age.  Emphasis was placed on being aware of increased clotting risk, infection and organ failure.

Another brilliant session I thought was valuable were the regional breakouts. Being an MPN AA advocate from Australia – ideas for more Asia/Pacific collaboration were bounced around and very positive. I’m looking forward to seeing some of these ideas come to fruition. Perhaps “Chai for Cancer” events at workplaces in Australia borrowed from advocacy group ‘Friends of Max’ in India’s success.

One of the advocates talked about their “March for Cancer” event and how citizen participation was important!  Perhaps we can bring back a lantern walk for MPN and other blood cancer advocacy.  The kids love this!

The importance of a healthy diet and exercise were again highlighted.  I for one will be trying to implement when my symptoms are ok, a more Mediterranean Diet of real foods (hopefully more than packaged and takeaway) and some gentle exercise for 30 mins a few times a week.

All in all the MPN Horizons conference was absolutely brilliant! A wonderfully informative and collaborative 3 days in Warsaw. I’m looking forward to seeing these developments turn into new application and drugs (some in clinical trials already) and much more positive patient outcomes for the future.

Share to:

Message for patients taking anagrelide

The MPN AA has become aware of a warning placed on the MPN treatment Anagrelide.

While haematologists would already know about the warning, and be managing patients’ treatment accordingly, the MPN AA wants to also inform any MPN patients taking anagrelide.  The warning states:

SPECIAL WARNING AND PRECAUTIONS FOR USE

Do not stop using anagrelide suddenly without checking first with your doctor.  Rather you may need to slowly decrease your dose before stopping it completely. Stopping suddenly will cause the platelet level in your blood to increase quickly. It should be noted that there is risk of thromboembolic events during this rebound phase which may lead to potentially fatal thrombotic complications, such as cerebral infarction. Platelet counts should be monitored closely when anagrelide is ceased.
We will update the other languages as promptly as possible, hopefully within a couple of weeks.

 

Share to:

Inflammation and MPNs

This presentation by MPN specialist Dr Hans Hasselbalch from Denmark is of great interest to MPN patients.
Whilst the topic is inflammation, and the importance of reducing inflammation, Dr Hasselbalch’s talk is comprehensive.

He explains the latest MPN research findings, including the extraordinary discovery that 11.3% of stroke victims have the Jak2 mutation. He also reminds us of the huge numbers of undiagnosed MPN patients around the world and the possibility of targeting and eliminating the Jak2 mutation when it is in its early CHIP stage.
He explains about the risk of inflammatory bowel disease in MPN patients, the benefit of early intervention with interferon and even a potential role for statins for MPN patients, and so very much more.

His talk is available HERE.

 

Share to:

MPN patient conference videos available

The videos and presentations from the inspiring MPN Horizons 2024 conference in Warsaw, Poland, are now available.
The conference shared the latest advancements in MPN research, treatment, and advocacy from a range of MPN experts.
Two Australian researchers David Ross from South Australia and Belinda Guo from Western Australia were amongst the presenters.  We have linked to a few of the presentations most immediately relevant to MPN patients:

ET

PV
  • State of the Art in PV
    Jean-Jacques Kiladijan (Virtual) – Video
  • Pipeline for PV
    Susanne Isfort  –VideoPDF
MF
And if you’re interested in research and future MPN drug treatments, the rest of the videos and presentations are available to watch HERE.
Share to: