MPN Education Morning & webinar – PeterMac – 18 February 2020

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

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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Easy new way for Australians to register to become a bone marrow donor

An exciting new change has occurred to the way Australians can register to become blood stem cell donors. A simple cheek swab is now all you need to do to register through the Australian Bone Marrow Donor Registry’s ‘Strength to Give’ campaign.

For a small number of  MPN patients, the only possibility of prolonging survival is through a blood stem cell transplant. Many other blood cancer patients also benefit from stem cell transplants. Please ask your family, friends and their friends to consider becoming a donor.


The Strength to Give donor recruitment campaign is targeted towards younger male donors (18 to 30 years old) as young male donors typically result in better outcomes for patients
and increases their overall chance at achieving a full recovery (unfortunately only 4% of the registry are young male donors). It is also important to attract donors from different ethnic backgrounds as patients are more likely to find a match with a donor from the same ethnic background. 

More information is available from the Strength to Give website at strengthtogive.org.au.

 

 

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MPN patient support group – 29 October at PeterMac in Melbourne

NEW MPN SUPPORT GROUP – Peter MacCallum Cancer Centre, Melbourne!
We are delighted to announce the PeterMac MPN team is launching an MPN Support Group on Tuesday 29 Oct from 10:00-1130am in the Wellbeing Centre, Level 1, with morning tea provided. This group plans to meet monthly. Anyone living with an MPN or caring for someone with an MPN is welcome, whether a Peter Mac patient or not. At the first meeting the Peter Mac MPN team will establish goals for the group and plan future events with guest speakers etc. No RSVP required. All welcome!

Further details are here:

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Leukaemia Foundation’s ‘Light the Night’ – October events across Australia

What is Light The Night?

Light the Night is the Leukaemia Foundation’s beautiful evening lantern walk, where Australians come together and transform the darkness into a sea of glowing light to give hope to all those impacted by blood cancer.

It’s your night to walk beside those facing their own blood cancer journey, and to remember loved ones lost.

As part of Light the Night, you can also help raise vital funds to support families living with all blood cancers and towards investment into life-changing research in fields which benefit all blood cancer patients.

This October 2019, more than 35,000 people will gather to walk at Light the Night events across the country. Carrying lanterns in symbolic colours of blue, white and gold, we will come together in an evening of reflective walk to support all Australians impacted by blood cancer.

When you register for Light the Night, you receive your special lantern to carry as darkness falls.

Lanterns are raised high in a moving ceremony to pay tribute to those facing their own blood cancer journey and to remember loved ones lost, creating a glowing sea of support. Together, the crowd then carries their lanterns along a reflective walk to Light the Night.

It’s an empowering, beautiful and supportive event that brings family and friends together to reflect, remember and show their support.

Register now to be a part of Light the Night

You’ll find everything you need to know about your local event – location, timing and all the event details.

 

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Call for PBAC submissions to make Jakavi available for PV patients

Novartis is proposing to the Australian Pharmaceutical Benefits Advisory Committee that Jakavi (ruxolitinib) be made available on the PBS for patients with polycythemia vera (PV).
Currently Jakavi is on the PBS for patients with myelofibrosis in certain circumstances.

The use of Jakavi by Novartis is proposed for PV patients in certain circumstances – that is, where a patient is resistant to or intolerant of hydroxycarbamide (also known as hydroxyurea or Hydrea).
The letter from Novartis to MPN AA’s Nathalie Cook and Ken Young provides further information on Novartis’ proposal. Novartis PV letter_Aug_2019

The Pharmaceutical Benefits Advisory Committee (PBAC) has opened a call for public submissions.  Submissions can be made up until 9 October 2019.

If you wish to make a submission, here is the link. https://www1.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form

 

 

 

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Next Canberra MPN Coffee and Chat – 16 June at 10.30-12

We have a delightfully supportive and friendly group of MPN patients in the Canberra region so if you live in or around Canberra, please come and join us.
There is always a great deal of news to share, experiences to recount, even sometimes blood test results to discuss!

We are meeting in a lovely warm room at the Peppers Gallery Hotel in new Acton to survive these chilly Canberra mornings and the coffee is excellent.
Our next get together is on Sunday 16 June from 10.30-12.  We hope you can join us.

More details are available HERE

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MPN AA supporting research into a new way to treat iron deficiency symptoms for PV patients

MPN AA is supporting MPN research at Melbourne’s Peter MacCallum Cancer Centre and Walter & Eliza Hall Institute of Medical Research, investigating a new way to treat iron deficiency symptoms and improve quality of life for people living with polycythaemia vera (PV). 100% of all tax deductable donations to MPN AA from now until the EOFY will go towards this important research.

Please use this link to make a tax deductable donation to this study: https://secure.leukaemiafoundation.org.au/regi…/donate.aspx…

This study is led by haematologists A/Prof Kate Burbury and Dr Sant-Rayn Pasricha, and medical scientist Dr Cavan Bennett.

Here is a lay summary of this study provided by the researchers:

‘Polycythaemia Vera (PV) is a myeloproliferative neoplasm (MPN) in which overproduction of red blood cells leaves patients at risk of complications including blood clots. PV affects ~15,000 Australians. The mainstay of treatment is venesection (blood withdrawal) which removes excess red blood cells and induces iron deficiency (iron is critical for the production of new red blood cells). However, venesection requires insertion of a large needle which can cause discomfort and bruising, is inconvenient as it requires patients to attend a clinic or day centre for care, and can cause fluid shifts which are difficult to manage. Finally, venesection induces total body, rather than blood specific, iron deficiency which can produce adverse effects (such as fatigue, restless legs, and cognitive dysfunction) that impair quality of life.

Iron levels are therefore critical in PV, and are regulated by specific hormones. We believe manipulating iron levels could be used as a protective mechanism to reduce the excessive red blood cell production in PV. Using a series of experimental models, we will uncover the mechanisms of iron regulation specific to PV patients and learn how these can be harnessed to help treat the disease. We will use a novel therapeutic (that is more convenient and predicted to have less side effects than conventional venesection) to manipulate iron levels and study whether this can treat the disease. We expect that the results of our studies will directly lead to a clinical trial for a new class of drug in the treatment of PV.’

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Video presentations available from the Joyce Niblack Memorial Conference on MPNs, 2019

You can now watch the video presentations from the 11th Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms , 2-3 March 2019, Scottsdale, Arizona.  The powerpoints of the presentations are also available to read online.
This biennial patient conference is organised by the MPN Education Foundation in the USA, and features presentations by many of the world’s leading MPN experts, including Dr Ruben Mesa, Dr Tiziano Barbui (Italy), Dr Joachim Deeg, Dr Claire Harrison (UK), Dr Jean J Kiladjian (France), Professor Richard Silver, Dr Robyn Scherber and many others.

These presentations are available  https://mpninfo.org/conferences/2019-conference/presentations/

Antje Hjerpe and the team at MPN Education Foundation have done an outstanding job once again to provide this resource to MPN patients and others with an interest in MPNs.

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New study: Burden of Myeloproliferative Neoplasms in Australia revealed

New research led by Cancer Council Queensland and Curtin University has investigated the patterns and trends of myeloproliferative neoplasms (MPN) for the first time in Australia.

The research, published in the American Journal of Hematology, explored the impact of MPN, which affects more than 5000 people in Australia currently, and found that the diagnosis and survival rates of these blood cancers are very similar to those found in recent studies in Europe, the United States and Asia.

Between 2003 and 2014, 8604 Australians were diagnosed with a classic MPN, with a median age of diagnosis of 68 years. About 80% of people diagnosed with MPNs will still be alive five years later.

Co-author Professor Peter Baade, from Cancer Council Queensland’s Viertel Cancer Research Centre, explained that prior to the study there had been no Australian data describing the burden of MPN in Australia.

“Our study adds to a body of data from multiple countries, showing an apparent change in incidence patterns of myeloproliferative neoplasms,” Professor Baade said.

“While the incidence of MPN has been declining since 2003, which is mostly due to a declining incidence of one type of MPN, polycythemia vera, the rates have increased for another subtype,  essential thrombocythemia.

“The reason for these observed trends, particularly the declining diagnosis rate of polycythemia vera, are still unexplained, but may reflect changes in clinical investigation and registry reporting practices rather than a true change in incidence.”

Study co-author John Curtin Distinguished Professor Lin Fritschi, from the School of Public Health at Curtin University, explained that changes in testing for specific genetic mutations may explain some of the trends.

“The specific gene mutations in MPNs have only been identified in the last decade and we now have tests for these genes; this has meant that many of the cases of MPN are diagnosed with blood tests and are not always picked up by the cancer registries,” Professor Fritschi said.

“This change in practice may be responsible for a reduction in reported MPN rates.

“Further research using accurate population-based data, including the collection of genetic information, is needed to assess the impact of changes in clinical practice in Australia.”

The research also involved researchers from University of Adelaide, Queen’s University and Northern Ireland Cancer Registry and Gosford Hospital.

The research paper, ‘Changing incidence of myeloproliferative neoplasms in Australia, 2003-2014’, can also be found online via the American Journal of Hematology: https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.25407.

More detailed information about this research is available from this attachment.  Research findings suppl info

A huge thank you from the MPN AA to all the researchers involved in this study and of course the Queensland Cancer Council and Curtin University.

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