National Strategic Action Plan for Blood Cancer launched

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The Leukaemia Foundation has announced a ground-breaking initiative for people with blood cancer in Australia with the launch of the National Strategic Action Plan for Blood Cancer.

The Australian Government commissioned the Leukaemia Foundation to develop the National Action Plan on behalf of the blood cancer community.
The plan is a blueprint to coordinate and accelerate national efforts to improve survival and quality of life for people diagnosed with blood cancer and to support their carers and families.  It identifies four major priorities:

  • Empower patients and their families
  • Accelerate research
  • Enable access to novel and specialised therapies
  • Achieve best practice.

MPN AA provided input into the plan’s development and is one of the Leukaemia Foundation’s partners in the plan.

The plan is available HERE.

 

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MPN Alliance Australia donates $15,000 towards groundbreaking MPN research at University of Western Australia

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MPN AA is very proud to announce that with the help of our supporters, we have donated $15,000 for MPN research in Australia to Professor Wendy Erber and her colleagues, Dr Kathryn Fuller, Dr Henry Hui and Dr Belinda Guo at the University of Western Australia. The team 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.

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. 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 wish Prof Erber, and Drs Kathy Fuller, Henry Hui and Belinda Guo every success with their research and look forward to sharing their progress in the future.

 

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New international website – MPN Hub

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We are pleased to discover that several European and American hematologists with a particular interest in MPNs have collaborated and established a website and twitter presence solely devoted to MPNs called MPN Hub. A facebook page and instagram account also complete the social media presence of the MPN Hub.

According to French hematologist Professor Jean-Jacques Kiladjian, MPN Hub ‘will be an open-access and unbiased educational website for all healthcare professionals …… providing the latest medical information, live congress coverage, trial updates, drug approvals, case studies as well as expert opinions.’
The twitter introduction states: ‘Lifting levels of knowledge in myeloproliferative neoplasms (MPN).  A global online platform providing latest treatment options and medical information.’

While patients are not MPN Hub’s primary audience, we believe this information is valuable for MPN patients to keep up to date about with developments in the MPN field.

For example, MPN Hub has been showcasing MPN findings from the European Hematology Association’s 2020 conference held ‘virtually’ in June this year.

Practice changing abstracts for MPN at the 2020 European Haematology Association conference

  • This is a 4 minute video overview by Professor Kiladjian.

Some of those practice changing abstracts relating to PV mentioned by Professor Kiladjian are at the links below.

  1. Should ropeginterferon become standard of care (SOC) for all patients with low-risk PV?
    While Ropeginterferon is not available in Australia, another form of pegylated interferon is available (called Pegasys).
    These findings are likely to be of particular interest to PV patients who are currently considered ‘low risk’.
    This study showed that while low risk patients are usually treated by phlebotomy only and aspirin, there were better results with interferon alpha compared with phlebotomy/aspirin only.
  2. PROUD-PV phase III results on ropeginterferon alpha-2b for polycythemia vera
    It is known that Ropeginterferon is able to reduce the Jak2 v617F allele burden. This article shows that it can also reduce associated mutations such as in TET2.
  3. TET2  mutations predict thrombotic risk in patients with polycythemia vera

Articles about drug developments/combinations in myelofibrosis presented at the EHA. This includes promising developments for MF patients refractory to ruxolitinib.

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Study invitation – investigating the impact of the COVID-19 pandemic

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Researchers at Queen’s University Belfast and the University of Aberdeen, invite you to take part in an online research study investigating the impact of the COVID-19 (coronavirus) pandemic on caregivers and patients with cancer, pre-cancerous conditions and rare diseases.
This survey is open to all patients and caregivers aged 18 years or older. To participate in this study, you will need to complete a short survey based on your own experiences. This survey should take around 20-30 minutes to complete.  The survey is now closed.

 

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Videos available – Peter Mac MPN patient education seminar, Melbourne, 18 February 2020

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Peter Mac has kindly made available to patients the videos from the MPN Patient Education Seminar held on 18 February 2020.

This event included the following sessions:

  • MPNs, what are they?                       Dr Kate Burbury
  • Fatigue Management                        Elizabeth Pearson, Occupational Therapist
  • Keeping well with MPNs                   Nathalie Cook, Accredited Practising Dietitian
  • How to get a good night’s sleep      Dr Oliver Holmes, Psychologist

The link to the videos is here.

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MPN updates for 2020 – video from Drs Ruben Mesa and Robyn Scherber

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Drs Mesa and Scherber, haematologists from the Mays Cancer Centre in the US, discuss the latest findings from the American Society of Hematology meeting in December 2019, as well as the latest updates regarding new treatments for MPNs.  They also discuss quality of life issues for MPN patients.

WATCH VIDEO

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Better accessibility to MPN AA website information for non-English speakers

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MPN Alliance Australia is pleased to advise that we have taken initiatives to improve accessibility to information on our website for patients and families in languages other than English.

We now offer treatment information on Hydroxyurea, Interferon, Anagrelide and Ruxolitinib in Arabic via our website. We are extremely fortunate to have been donated the services of an accredited Arabic translator.

Due to the substantial cost involved of translations, Arabic is the only language so far that we are able to provide.  We hope in the future to have others but need to rely on the generosity of appropriately accredited translators.

We have also uploaded a Google translate button onto the website which provides our information in all the world’s main languages. The translate button appears at the top left-hand corner of each MPN AA website page. This service is used by other respected organisations such as the Leukaemia Foundation and the Therapeutic Goods Administration.

As with the English language information on the website, translated information is general in nature, and it is the responsibility of all patients to ensure that they seek appropriate medical advice in the light of their own particular circumstances in relation to diagnosis and treatment of their MPN.  It is not intended that patients rely solely on anything they may read on this website.

 

 

 

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$35,000 donation to Dr Steven Lane, QIMR, for MPN research

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Pictured here is Dr Steven Lane, Head of Cancer Program QIMR Berghofer Medical Research Institute, receiving a donation of $35,000 from Lara Chapman and the MPN AA.

The money is being used to further understand the mechanisms of how MPNs turn into leukaemia. The research is underway in Brisbane and will generate important preliminary data that helps explain molecular events that drive the transformation from MPN to AML. Ultimately, uncovering molecular targets will inform the development of targeted therapeutic approaches for treatment of transformed MPN, a highly chemo-refractory disease associated with extremely poor prognosis in patients.

On behalf of Dr Lane and the MPN AA, sincere thanks to all the donors who have made possible this valuable contribution to MPN research. The cheque for $35,000 is a result of various fundraising activities since the inception of the MPN Fund in 2014 and the first online MPN Art Exhibition in 2017.

Lara has announced this was her last official duty with MPN AA. She has said “I would like to take this opportunity to thank each and every donor, supporter and the people that I have worked with over the last seven years:-  MPN advocates worldwide, MPN AA colleagues past and present, Leukaemia Foundation, MPN Research Foundation, University of Queensland Diamantina Institute, MPN Advocacy & Education International, haematologists, friends and family members, for your support in believing in the idea of establishing the MPN Fund and MPN Alliance Australia to benefit the MPN community. I am proud of the platform that has been created to increase awareness, the useful resources available on the MPN AA website and importantly the valuable contribution to MPN research.”

We wholeheartedly wish Lara all the best in her future endeavours, including her wonderful painting. We salute Lara for her determination and for all the hours of work she spent in establishing MPN AA, as well as her fundraising efforts. She leaves a lasting legacy.

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Explore the New Carer Gateway for Australians

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Explore the new Carer Gateway

Carers in Australia can now find new supports and services, as well as clear advice and tips, on the new Carer Gateway website. If you care for a family member or friend, then Carer Gateway could help you.

The new Carer Gateway:

  • provides practical information and advice – the website has been rewritten to make it easy for carers to find the information they need. Carer Gateway has lots of information for carers, including what payments you can get; how you can take a break; and help and advice on your role, managing day to day, and planning for the future
  • provides free counselling services – you can talk with a professional counsellor if you are feeling stressed or if you need advice. You can arrange to talk with a counsellor over the phone or in person.
  • lets you connect with other carers through an online forum – you can join the carer forum to be part of an online community and get support and advice from other carers in your situation
  • provides free online coaching and skills courses to help you in your role – you can work through interactive online coaching sessions or courses at your own pace. You can find a range of topics to help you in your caring role

The Minister for Family and Social Services, Senator the Hon Anne Ruston also recently announced the development of a new regional network of Carer Gateway service providers who will start services from April 2020.

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Leukaemia Foundation shines spotlight on MPN Awareness Day

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The Leukaemia Foundation supports MPN Awareness Day (September 12).

 

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