Podcast – Nathalie Cook’s Pegasys story

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The Leukaemia Foundation has just launched Season 2 of their ‘Talking Blood Cancer’ podcast series.

We are delighted to let you know that the first podcast features the MPNAA’s own Nathalie Cook. She shares her own MPN story and her success with using Pegasys (pegylated interferon) for controlling her blood counts.

Nathalie played a pivotal role in having Pegasys listed onto the Pharmaceutical Benefits Scheme here in Australia. It has been available to patients on the PBS since 2018.

You can listen here to Nathalie’s Pegasys story

 

 

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MPNs and fatigue

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Ken Young, a founding member of the MPN AA and well known to the Australian MPN community, has co-authored an article about how fatigue can be a problem for MPN patients.
The research surveyed 90 patients who had already identified as suffering fatigue. Researchers then undertook qualitative research with those MPN patients and 23 were interviewed in considerable depth. The level of fatigue appeared to be more marked in patients with myelofibrosis.

The authors concluded that ‘health professionals could affect patients’ lives substantially by acknowledging and understanding fatigue in MPN, including contributing factors and potential opportunities for management.’  The article also proposed that ‘More systematic data describing the causes and management of MPN fatigue is needed.’

The full article is available HERE.

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Updated MPN booklet

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The Leukaemia Foundation provides a range of information and services to support and inform blood cancer patients. It has just released a new MPN booklet Myeloproliferative Neoplasms – a guide for people with MPN and their support people (November 2021).

This is a detailed booklet about MPNs, medically reviewed and updated.
You’ll find it contains plenty of helpful information about diagnosis, treatment, navigating the health system and much more.

 

The electronic version of the booklet is available HERE.

If you would like a hard copy of the booklet, please contact the Leukaemia Foundation on 1800 620 420.

 

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Swab a cheek and save a life

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The Australian Bone Marrow Donor Registry is urging Australians to consider becoming a bone marrow donor.  It’s a very simple process through its ‘Strength to Give’ campaign.

Please ask your family, friends and their friends to consider becoming a donor.

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.

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.

Some heart-warming stories from donors and more information is available from the Strength to Give website at strengthtogive.org.au.

 

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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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$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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MPN AA donates $10,000 to Australian MPN research

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Thanks to all our donors who made it possible for Nathalie Cook and Ken Young of MPN AA to present a cheque today for $10,000 to Dr Cavan Bennett and haematologists A/Prof Kate Burbury & Dr Sant-Rayn Pasricha of Peter Mac and WEHI to support their exciting research into PV. We raised over $7000 in our End of financial Year fundraiser, and topped this up with previously donated funds to support this worthwhile research. We are so happy that this MPN research is being carried out in Australia, and are very thankful to the researchers.

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MPN Patient Information Afternoon – Sydney – 23 February 2019

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MPN AA and the Leukaemia Foundation collaborated to stage this very successful MPN patient information event at Royal North Shore Hospital in Sydney, attended by 60 patients and family members.
MPN AA is very grateful on behalf of MPN patients for the great job done by Greg Zotos from the Leukaemia Foundation, and also Madeline Thompson on the day.
The presentations were great – firstly Dr Renee Eslick spoke very informatively about “Diagnosis of MPN”. Sue McConaghy, psychologist, spoke on the topic “This is Not the Life I Ordered”, providing ideas about tools we could use to help manage unwelcome and unplanned events in our lives – relevant to all of us at times! We then broke for a lovely afternoon tea, and reconvened to hear Dr Carmel Sullivan speak about how yoga could enhance our physical and mental health and quality of life. Dr Cecily Forsyth followed, and spoke on the topic “Optimal Management of MPN in Australia”, about the latest research on how MPN patients should be managed, going through the 3 main MPN subtypes in order, but acknowledging the shades of grey that exist, and the need to treat each patient as an individual.
Patients seemed to be very engaged, and there was lots of chat in the afternoon tea break, and also some constructive to and fro between patients during the question time.
Videos of the two haematology presentations by Dr Eslick and Dr Forsyth are available for viewing on our MPN Video Presentations page.
Full details of the patient information afternoon, including powerpoint presentations from all the talks are available HERE.
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MPN Patient Information afternoon – Sydney

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SAVE THE DATE. MPN AA has been negotiating with the Leukaemia Foundation and a number of great presenters to hold an MPN Patient information afternoon in Sydney on Saturday 23 February 2019. Further details and opportunity to book a  place coming soon.

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