Polycythemia vera: 2024 update on diagnosis, risk-stratification and management

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MPN specialist haematologists, the USA’s Ayalew Tefferi and Italy’s Tiziano Barbui have just released a very extensive overview of polycythemia vera.

The overview is detailed and includes:

  • an important update that recognises interferon as a first line treatment option along with hydroxyurea, as well as much discussion of the latest research into treatment options,
  • advice on pregnancy management in PV patients,
  • a detailed explanation of the genetic landscape and potential implications,
  • discussion of research on life expectancy,
  • and much more.

The article appears in the American Journal of Hematology and is open sourced and can be accessed HERE.

If you’d like to see more articles on polycythemia vera, our guidelines page can be accessed HERE.

 

 

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September is blood cancer awareness month

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September is blood cancer awareness month and an ideal time to reflect on living your best life with an MPN!

The SIMM study (Survey of integrative medicine in myeloproliferative neoplasms) found ‘an overall pattern of lower symptom burden, fatigue, depression, and higher quality of life were revealed with integrative medicine utilization’.  Integrative medicine refers to such things as yoga, aerobic activity, strength training, meditation, massages, support groups, improved nutrition etc.

To find out more about living well, we recommend revisiting this excellent webinar, organised by the Leukaemia Foundation, which features patient stories as well as outstanding presentations by:

  • clinical haematologist Cecily Forsyth who has a special interest in MPNs (commencing at 12 minutes into the webinar),
  • health psychologist Jane Fletcher whose perspective and sensible suggestions are incredibly encouraging and motivating (at 51 minutes), and
  • physiotherapist Julie Allen, herself a lymphoma survivor who provides a wealth of knowledge about how to manage fatigue and the physical impacts of blood cancer (at 1hr 39 minutes).

It is a long webinar but it is extremely informative, inspiring and we can’t recommend it highly enough.  It is available HERE.

And of course our own LIVING WELL pages contain a wealth of information for MPN patients about nutrition, meditation, maintaining muscle mass etc.

 

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Let’s support ground breaking MPN research by award winning researchers at the University of Western Australia!

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Professor Wendy Erber and her colleagues, Dr Kathryn Fuller and Dr Henry Hui at the University of Western Australia, (pictured above) are undertaking research on a new technique to see if they can detect which MPN patients may be at risk of progressing to leukaemia or marrow fibrosis. It is hoped this may ultimately provide an alternative to the current method of utilising bone marrow biopsies for the purpose of detecting the first signs of disease escape or progression. Although only a minority of MPN patients are affected, it is not currently known who this might affect or when this will occur. By the time symptoms appear, it is generally difficult to cure. Hence a predictor of progression may assist in providing treatment earlier and possibly providing cures.

We all have small numbers of circulating stem cells (CD34+). In MPNs, the numbers are higher than those who do not have an MPN. They further increase in number with progression to leukaemia and marrow fibrosis. The team is about to commence looking at a new approach using these CD34+ cells in the blood to see if they have changes in the chromosomes that may predict progression or change in status of the MPN. They have some support from a University grant to get this started, and have formed a collaboration with MPN haematologists and scientists in Belfast to include samples from their patients.

The method the team will use is their own invention, and the one that won a Eureka Award (affectionately known as the “Oscars of Science”!) in 2018 (https://www.youtube.com/watch?v=-AvLxCLkAJc). As you will see from the Youtube video it is a flow cytometry method that enables the study thousands of cells to see if the cell-of-interest has the chromosome change that may predict progression.

We are exceedingly fortunate to have researchers of such high calibre working on MPNs in Australia. MPN AA is raising funds to support their research. Let’s get behind them!

Please support this ground-breaking MPN research in Australia this Christmas, and donate via this link.

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‘Blood Bath’ for Blood Cancer Awareness Month raises $350

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Many thanks to Asher Packman for holding a ‘Blood Bath” for Blood Cancer Awareness Month.  Despite a very chilly day, a total of $350 was raised.  Asher has donated all proceeds to the MPN Fund and the MPN Alliance Australia.  The MPN AA would like to thank Asher for his support.

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MPN Charity Dinner raises $23,505 for MPN research

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Congratulations to Jolanda Visser on her outstanding success – raising $23,505 at a MPN Charity Dinner, in Adelaide,  which she organized on behalf of the MPN AA.

The MPN AA are grateful for the support of the Leukaemia Foundation with Julia Clarke as the Master of Ceremonies and Kerryn Lambert, from the Leukaemia Foundation, Perth, assisting on the night.

The night was attended by 166 people and a total of 73 items were donated and were sold via auction, silent auction and raffle. Live music was provided by the “Soul’d Out” Band at the gorgeous venue, The Grand Ballroom, Tapleys Hill Road, Fulham Gardens.

The MPN AA would like to thank all sponsors and prize donors who enabled the night to be such a success.  A special mention goes to Australian Unity.  The MPN AA appreciates all their support.

All money raised is being used to support improved Australian MPN epidemiological research by Professor Lin Fritschi (Curtin University of Western Australia).

If you would like to read Jolanda’s full speech, please click here.

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European Hematology Association (EHA) 2018 Update

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Haematologist Professor Andrew Grigg recently attended the European Haematology Association (EHA) conference in Stockholm and has kindly allowed the MPN AA to share his summary of MPN studies presented at the conference.  Many thanks Professor Grigg!

View Professor Grigg’s summary here.

 

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