Phase III study of Momelotinib launched to evaluate efficacy in myelofibrosis patients

Myelofibrosis patients may be interested to know that the pharmaceutical company Sierra Oncology has announced the global launch of the new phase III MOMENTUM clinical trial.
This trial is evaluating the efficacy of momelotinib, a JAK1, JAK2 and ACVR1 inhibitor, versus active comparator danazol in patients with symptomatic and anaemic myelofibrosis.

There are Australian sites in Adelaide, Melbourne, Newcastle and Perth – see Australian clinical trials database for further information. (We suggest searching with myeloproliferative neoplasms in the keyword category).

If you think that this clinical trial might be appropriate for you, we strongly suggest that you discuss this matter in detail with your haematologist to explore whether or not it would be suitable for your circumstances.
Read more about clinical trials here.




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COVID-19 and cancer in Victoria – models of care

MPN expert (and telehealth expert) Associate Professor Kate Burbury from the Peter MacCallum Cancer Centre and MPNAA’s Nathalie Cook  join the Cancer Council Victoria’s Danielle Spence and Katherine Lane, as well as primary care expert Professor Jon Emery from the University of Melbourne, to explore how telehealth and other models of care can balance health service delivery during a pandemic.

Watch the discussion presented by the VCCC in partnership with the Monash Partners Comprehensive Cancer Consortium – HERE

And don’t forget MPNAA’s COVID-19 resources page.

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Australian Leukaemia and Lymphoma Group (ALLG) – Information Sheet for Cancer Patients, Families and Carers on COVID-19

Read this newly published guide here.

The guide is a companion to the new ALLG clinical guidelines on COVID-19 for haematology and oncology published in the Medical Journal of Australia, (20.3.20). A great collaboration with reviews by over a dozen cancer charities.


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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 ( 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



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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.




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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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