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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Leukaemia Foundation’s July MPN newsletter

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The Leukaemia Foundation has released its latest newsletter for MPN patients and it’s an excellent read.
There is so much happening in the MPN space in Australia.
Individual links to each story in the July newsletter are provided below.

1.  A tool predicting the potential progression of MPNs is something under development from Professor Wendy Erber, a world leading diagnostic haematologist and MPN specialist, and her team of dedicated researchers.

2.   An antibody for myelofibrosis – “that’s a true discovery”
A new monoclonal antibody discovered by Adelaide researchers could become the world’s first effective treatment for primary myelofibrosis.

3.   Expert interview with Dr Cameron Curley on transplantation and CAR-T therapy.

4.  Patient stories 

–  Living with PV has become “a normal way of life” for Debbie

–  Charlie’s blood cancer went undiagnosed for a decade

5.    Clinical trial comparing allogeneic stem cell transplants vs best available non-transplant therapies for myelofibrosis (MF).
Associate Professor Nada Hamad is the Australian lead on this international trial which will compare best available non-transplant therapies with stem cell transplant for MF patients.

6.    Optimal care pathways being developed for blood cancer patients.

7.   WEBINAR: Exploring real life with blood cancer: The mind and body experience

This is a brilliant webinar, packed full of valuable advice featuring:
–  haematologist Dr Cecily Forsyth
–  psychologist Jane Fletcher
–  physiotherapist Julie Allen

8.   PODCAST: Talking Blood Cancer podcast series from the Leukaemia Foundation has been a great success and is filling a need for people living with blood cancer.

9.   More MPN stories from this and earlier newsletters are available

10.  Need support?
The Leukaemia Foundation encourages you to find out about the different ways they can help
– by visiting their  website or
– by calling 1800 620 420 to speak with a Blood Cancer Support Coordinator.

 

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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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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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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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Invitation to participate in Living with MPN Fatigue study

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Australian MPN patients are invited to take part in a research project called Living with MPN Fatigue. This project aims to improve the understanding of the human experience of MPN fatigue (being tired).

You are eligible to take part if you have an MPN or CML diagnosis, live in Australia and have experienced fatigue affecting what you are able to do during the last 6 months.

You are invited to fill in a survey about your fatigue experience. This survey does not need to be completed all at once, you may answer some questions and then return at a later time or date to continue, within 2 weeks after you started it.

Further details are below but use this link to participate in the study and for more information. https://redcap.link/mpnfatigue2020

 

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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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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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Canberra MPN ‘Coffee and Chat’ group

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Canberra MPN ‘Coffee and Chat’ group

Here in the nation’s capital, we have established a regular ‘coffee and chat’ group for MPN patients and their families or carers.  So far we have had two monthly get-togethers in a cosy lounge area of a Civic café, Xchange on London, on a Saturday morning. We might even branch out to the stunning outdoor setting of the National Library’s café when the weather warms up. Canberra is such a beautiful city and it really is a delight to be in such exquisite surroundings.

  

For our first two get-togethers we have had initially 8, then 10 attendees, and we have the three main types of MPN represented: 2 myelofibrosis, 3 polycythaemia vera and 2 essential thrombocythaemia.  Our other attendees have been family members which has been much appreciated.

I guess it’s a cliché but we have all found it so helpful to meet other MPN patients face to face and talk about our issues and concerns. We really understand each other as we share our stories, our diagnoses, our experiences with various medications, our hopes for a cure, and of course our ups and downs living with an MPN. One member has even had a bone marrow transplant more than 25 years ago, and is ‘alive and well and living in Weston Creek’ so it is very encouraging to hear his experiences and see him in good health.

I should reassure you that we try not to talk about the political scene here in Canberra, tempting as it is with the latest political dramas! Rather these chats have been very companionable and informal. We have agreed to see how we go meeting monthly and we would love you to join us if you have an MPN or are a family member or carer for someone with an MPN.

For details of the next get-together, keep an eye on this website under ‘Events’ and we will also advertise on our MPN Alliance Australia facebook page, Ken Young’s MPD-oz Email Support Group (mpd-oz@mpd-oz.org) and Josie Muller’s MPN Australia & NZ Myeloproliferative Neoplasm Support Community facebook page.

Jenny Myers
(Polycythemia Vera -diagnosed December 2014)
MPN Alliance Australia

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MPN Patient Program – 28 April 2017

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The Australian MPN community was given a wonderful gift on Friday 28 April by Ann Brazeau and her team from MPN Advocacy and Education International, together with Drs Ruben Mesa, Laura Michaelis, and Raajit Rampal from the US; and Drs Cecily Forsyth, Steven Lane, Kate Burbury, David Ross, and Wendy Erber, and Andrew Lim, (standing in for Prof Andrew Grigg), from Australia.

Months of planning culminated in an outstanding educational event for the group of over 150 Australian MPN patients, caregivers and haematologists.

We all expected great things from the US contingent, and they certainly delivered. We were also extremely impressed by the presentations from our home-grown haematologists. The level of passion, dedication and care for patients was very evident in each and every one of the presentations.

After the formal presentations, patients and caregivers were able to ask questions of the presenters in disease-specific break-out sessions.

I think for patients and caregivers ranging from the newly diagnosed to the old hands, everybody learned something, and valued the opportunity to share with patients and professionals during breakfast, lunch, and the wonderful Mix and Mingle event at the end of the day. If we didn’t finish all that wonderful food, it was only because we were so busy talking!

Given the amount of information which was presented on the day, I am looking forward to seeing the video of the presentations, to have the opportunity to revisit it.

Together with my MPNAA colleagues, I felt privileged to have had the opportunity to listen to the clinicians in their meeting on the Thursday afternoon, as we gained insights into the challenges of diagnosis and treatment of these complex blood cancers.

Thanks so much to Ann and Marina (as well as Kathleen behind the scenes) and the wonderful doctors who were willing to cross the vast Pacific to share their knowledge. Thanks also to all the wonderful clinicians and researchers who came from far and wide across Australia. Together you enlightened, empowered and entertained all those who were lucky enough to be present!

I feel so inspired.

Sue Taylor

Videos of the presentations are available here.

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