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Dr Kai Li Chai receives scholarship

Monash University’s Dr Khai Li Chai receives scholarship to further research into immunoglobulin therapy

Wednesday 27 November 2019

The Leukaemia Foundation and the Haematology Society of Australia and New Zealand (HSANZ) have collaborated to award Monash University PhD student Dr Khai Li Chai a three-year, $120,000 scholarship.

The funding will support Dr Chai’s research into hypogammaglobulinaemia in people living with a range of blood cancers: chronic lymphocytic leukaemia (CLL), non- Hodgkin’s lymphoma (NHL) and multiple myeloma, and individuals who have undergone stem cell transplants.

Hypogammaglobulinaemia is a condition where the body does not produce enough antibodies and can be associated with serious and recurrent infections. It is a significant cause of mortality and morbidity in affected patients.

Dr Chai’s work will evaluate the efficacy, standard of practice and clinical outcomes of immunoglobulin therapy, which is frequently administered to patients with hypogammaglobulinaemia . Her work will investigate how detailed patient immune profiles can be used to guide and monitor optimal dosing and duration of immunoglobulin therapy to develop a more clearly defined and effective standard of care.

Leukaemia Foundation CEO Bill Petch said the Leukaemia Foundation HSANZ New PhD Scholarships are part of the Leukaemia Foundation’s National Research Program which has seen more than $50 million invested into blood cancer research since 2002.

“Over the past 17 years the National Research Program has supported 506 researchers and co-investigators to undertake 278 research projects through PhD scholarships, clinical and post-doctoral fellowships and research grants,” Mr Petch said.

“The investment into research has contributed to the development of many new techniques and therapies which are now either undergoing clinical trials or are being used in clinics as part of everyday therapy. This includes treatments like Venetoclax, bortezomib, CAR T-cell therapy and liquid biopsies for blood cancers – a world first.”

Accelerating research and providing equal access to best practice treatments were also identified among the Leukaemia Foundation’s key priorities in the recently released State of the Nation: Blood Cancer in Australia report . The report showed accelerating research has the potential to further reduce mortality rates and health and economic costs of blood cancers, which are projected to claim more than 186,000 lives between now and 2035 – equal to more than 1.4 million years of potential life lost.

The Leukaemia Foundation receives no ongoing government funding, and the National Research Program relies on the continued support of generous donation.

“Donations allow us to continue to invest in Australian blood cancer research and to support the next generation of researchers, driving this type of innovative research for better treatments, better care and ultimately a cure for blood cancer,” Mr Petch said.

To find out how to support the Leukaemia Foundation’s National Research Program call 1800 620 420.

Subscribe to receive the Leukaemia Foundation’s news and updates here.

Burden on rural patients lightened

Burden lightened for rural patients needing life-saving treatment

The Leukaemia Foundation’s patient accommodation facilities in Townsville will continue to be a home away from home for blood cancer patients from rural and remote Queensland, following a sizable donation from the Freemasons.

As Aramac Masonic Lodge, some 550km away closed its doors for the last time in 2019, they had one final wish – to help support outback cancer patients and their families.

So together with Hand Heart Pocket the Charity of Freemasons Queensland, the Lodge recently donated $60,000 towards the Queensland Freemasons Village, which offers accommodation and support for patients and their families while they undergo treatment at Townsville Hospital.

Freemason David Gray, formally of Aramac Masonic Lodge, said he was excited to make the journey up to Townsville today, to celebrate the donation.

“$60,000 could provide over 750 nights of accommodation, which act as a home-away-from-home for families during blood cancer treatment,” he said.

“People with blood cancer from our own community in Central West Queensland have stayed at the Village, so we know how having a place to stay made an immense difference for them,” he said.

Leukaemia Foundation CEO Bill Petch said last financial year the Leukaemia Foundation provided 5,213 nights of accommodation to 125 families at Freemasons Village – with 72 of these families staying more than once during their blood cancer journey.

“Every day another 41 Australians are diagnosed with a blood cancer, and unfortunately most regional and rural Australians who are diagnosed will have to leave their home, work and local community behind to relocate to a major city for their treatment,” he said.

“Providing this accommodation service in Townsville is the Leukaemia Foundation’s way of giving blood cancer patients living in regional and rural areas a chance to access life-saving treatment with their loved ones by their side, free of charge.

“The Leukaemia Foundation is deeply grateful for this incredibly generous donation which will have a huge and positive impact on Queensland families in their greatest time of need during their blood cancer journey.”

Hand Heart Pocket Chief Executive Officer Gary Mark was appreciative of Aramac Lodge for bringing this initiative to the organisation’s attention so that together a bigger difference could be made, through their Grassroots Grants program.

“Our focus is to alleviate suffering and to empower people to lead better lives, which is why this initiative appealed to us,” Gary said.

“At a grassroots level, we recognise the importance of ensuring health services remain accessible to regional and remote Queenslanders.”

About Hand Heart Pocket

As an independent charity founded by the Freemasons of Queensland, Hand Heart Pocket helps in areas of state-wide and local need that have limited access to other funding. We work with other charities to identify and fund initiatives that have real, life-changing potential. We also collaborate with Freemason Lodges across Queensland and help individuals in times of extreme need to get them back on their feet. We use our funds wisely to give a hand up and to build potential.

For more information about Hand Heart Pocket, visit www.handheartpocket.org.au 

Subscribe to receive the Leukaemia Foundation’s news and updates here.

Vital cancer treatment now available through Pharmaceutical Benefits Scheme

Vital cancer treatment now available through Pharmaceutical Benefits Scheme (PBS) for more Australians living with blood cancer

The Leukaemia Foundation has welcomed news that cancer treatment, blinatumumab (Blincyto®) will be available for patients in the early stage of acute lymphoblastic leukaemia (ALL) who have minimal residual disease (MRD, through the Pharmaceuticals Benefits Scheme (PBS) effective December 1, 2019. A patient has MRD if they respond well to initial chemotherapy, but a small number of cancer cells can still be detected.

Blinatumumab (Blincyto ®) was previously available through the PBS only for patients with relapsed or refractory forms Philadelphia chromosome negative (Ph-) B-cell acute lymphoblastic leukaemia (B-ALL).

Acute lymphoblastic leukaemia is a rare, life-threatening form of leukaemia that affects both adults and children. Up to 450 Australians are diagnosed with acute lymphoblastic leukaemia each year, and around half are children.

Leukaemia Foundation CEO Bill Petch joined Federal Minister for Health, The Hon. Greg Hunt MP and industry leaders today at the Royal North Shore Private Hospital in Sydney for the announcement.

Mr Petch said the extended listing of blinatumomab meant that there were more options available for acute lymphoblastic leukaemia patients, which is welcomed and appreciated by the blood cancer community.

“This is an important announcement for people living with acute lymphoblastic leukaemia, which is an acute and incredibly aggressive form of blood cancer.” he said.

The announcement comes just one-week before the national Blood Cancer Taskforce are set to meet at the Australian Parliament House in Canberra with the Federal Minister for Health.

In response to the Leukaemia Foundation’s Blood Cancer in Australia report recently released, the Federal Minister for Health, The Hon. Greg Hunt MP announced the development of a national Blood Cancer Taskforce and charged the Leukaemia Foundation with delivering Australia’s first National Strategic Action Plan for Blood Cancer, with a goal of zero lives lost from blood cancer by 2035.

The Blood Cancer Taskforce unites Australia’s leading hematologists, researchers, patients and members of the blood cancer ecosystem for the first time to work with the Leukaemia Foundation to develop the National Strategic Action Plan, which will provide the blueprint to help tackle key issues facing people affected by blood cancer community today and into the future.

Mr Petch said the formation of the Taskforce and development of the National Strategic Action Plan together mark a major milestone for the blood cancer community and will set the national agenda around blood cancer for many years to come.

The Leukaemia Foundation provides free practical, emotional and educational support to Australian’s diagnosed with a blood cancer including ALL. The Leukaemia Foundation produces a series of disease specific newsletters including ALL News, and invites all Australians living with the disease to subscribe for ongoing information here.

Leukaemia Foundation HSANZ PhD scholarship for Monash researcher

LEukaemia FOundation HSANZ PhD scholarship for Monash researcher

The Leukaemia Foundation and the Haematology Society of Australia and New Zealand (HSANZ) are proud to announce Dr Liesl Butler from Monash University has been awarded a $120,000 New Investigator PhD scholarship for 2020.

The funding will support Dr Butler’s research into developing improved biomarkers and targeted therapies for the chronic blood cancers known as Myeloproliferative Neoplasms (MPNs) to improve the ability to detect, treat and predict the course and outcomes for the 1,205 Australians diagnosed with the disease each year.

“MPNs are lesser known than many blood cancers and recent research shows that like all blood cancers, their incidence and mortality rates have been underestimated and underreported,” Leukaemia Foundation CEO Bill Petch said.

“Unfortunately, as with all blood cancers and disorders, this means we will see more Australians diagnosed with this disease in coming decades.

“Dr Butler’s research will focus on furthering understanding of MPNs by investigating the gene mutations and biological pathways that lead to the development of these diseases, with a view to advancing therapeutic options and improving clinical outcomes for Australians living with the disease.”

MPNs occur when bone marrow stem cells grow and reproduce abnormally. In patients with MPN, abnormal stem cells produce excess numbers of one or more types of blood cells (red cells, white cells and/or platelets). These abnormal cells cannot function properly and can cause serious health problems unless properly treated and controlled.

People with MPN have an increased risk of the disease transforming to an acute leukaemia depending on the subtype – essential thrombocythaemia (4%) Polycythaemia vera (9%) and myelofibrosis (21%).

“It’s paramount we continue to invest in Australian blood cancer research and to support the next generation of researchers – like Dr Butler – to examine emerging and cutting-edge therapies with the aim to lead us closer to better treatments, care and ultimately a cure for blood cancer,” Mr Petch said.

The Leukaemia Foundation HSANZ New PhD Scholarships are part of the Leukaemia Foundation National Research Program which has seen more than $50 million invested into blood cancer research since 2002.

“Over the past 17 years the National Research Program has supported 355 researchers and co-investigators to undertake 260 research projects through PhD scholarships, clinical and post-doctoral fellowships and research grants,” Mr Petch said.

“The investment into research has contributed to the development of many new techniques and therapies which are now either undergoing clinical trials or are being used in clinics as part of everyday therapy. This includes treatments like Venetoclax, bortezomib, CAR T-cell therapy and liquid biopsies for blood cancers – a world first.”

Accelerating research and providing access to best practice treatments was also identified as one of the Leukaemia Foundation’s key priorities in the recently released State of the Nation: Blood Cancer in Australia report. The report showed accelerating research has the potential to further reduce the mortality rates and economic costs of blood cancers, which are projected to claim more than 186,000 lives between now and 2035 – equal to more than 1.4 million years of potential life lost.

The Leukaemia Foundation receives no ongoing government funding, and the National Research Program relies on the continued support of generous donation. To find out how to support the Leukaemia Foundation’s National Research Program call 1800 620 420.

“Donations allow us to continue to invest in Australian blood cancer research and to support the next generation of researchers, driving this type of innovative research for better treatments, better care and ultimately a cure for blood cancer,” Mr Petch said.

ABOUT MPN

  • Myeloproliferative neoplasms (MPN) are a group of disorders in which the bone marrow stem cells grow and reproduce abnormally.
  • MPNs are sometimes described as being clonal blood stem cell disorders. This means that they result from a change, or mutation, in the DNA of a single blood stem cell.
  • In MPN the original mutation is preserved when the affected stem cell divides and produces a ‘clone’: a group of identical stem cells all with the same defect. Mutations in dividing cells occur all the time and healthy cells have sophisticated mechanisms within them to stop these abnormalities persisting. But the longer we live, the more chance we have of acquiring mutations that manage to escape these safeguards.
  • MPNs are usually described according to the type of blood cell which is most affected. MPNs are closely related diseases, so it’s not uncommon for people to have features of more than one MPN when they are first diagnosed, or during the course of their illness.
  • The three main forms of MPNs – polycythaemia vera , essential thrombocythaemia and myelofibrosis, There are also rarer, sub sets of the disease.
  • MPN is more commonly diagnosed in people over the age of 50 although it can rarely occur in younger people, even very more rarely in children. Most people with an MPN have no family history of the disease.
  • Many people have no symptoms when they are first diagnosed with an MPN and the disease is picked up accidentally during a routine blood test or physical examination.
  • Symptoms include headaches, blurred vision, fatigue, weakness, dizziness, itchiness, night sweats and raised blood pressure.

Find out more about MPN here or subscribe to the Leukaemia Foundation’s MPN Newsletter here.

Robert’s battler spirit not only helped him take on the Kokoda trail but also an ALL diagnosis

Robert’s battler spirit not only helped him take on the Kokoda trail but also an ALL diagnosis

Robert, 60, of the NSW central coast has never been one to shy away from a challenge, conquering the Kokoda trail, the Himalayas, as well as a shock acute lymphoblastic leukaemia (ALL) diagnosis in 2014.

Robert on the Kokoda trail
Robert on the Kokoda trail

Kokoda was the first trek for Robert and his wife Kelly also taking along their son, Bruno who was just 15-years-old at the time.

“I thought it was a great opportunity for us to do something of importance together – I have a very keen interest in war and history so wanted to get a better understanding of what the Aussie militia went through to protect our country,” said Robert.

“We ended up getting a group of 16 people together for the trek and underwent nine months of training to prepare. We did a lot of research and had heard from others about how tough it is. We went to the gym six days a week religiously to get our cardiovascular fitness up and then three months prior we also joined a boot camp.”

“But really, the best training would’ve been walking up and down a ladder with a sack of potatoes on your back. A particularly unforgiving part of the trek is Seven Hills that’s up and down for 3 hours straight, a huge mental and physical battle.

“When we first got there I thought I was Arnold Schwarzenegger and insisted on carrying all my gear like what the Aussie soldiers did. Halfway through the first day I literally collapsed and couldn’t get back up so they offered me a porter for the rest of the week… I couldn’t get rid of my stuff fast enough offering my firstborn in exchange – luckily Bruno has an older sister so wasn’t offended,” laughs Robert.

Robert says that despite the relentless challenge of the trek, it’s one of the best things he has ever done.

Robert (right) with wife, Kelly and son, Bruno (L-R)
Robert (right) with wife, Kelly and son, Bruno (L-R)

“You hear so many stories about the displays of the heroism of our Aussie soldiers but actually being there and seeing what they had to go through – it’s both unbelievable and heartbreaking,” said Robert.

“Walking through the Owers’ Corner arch at the end is a particularly special moment and felt like a big achievement.

“I would highly recommend the trek, it was a trip of a lifetime and we certainly won’t forget it anytime soon.”

Robert’s experience on the Kokoda trail certainly draws some parallels to his experience being treated for ALL.

“It’s so important to believe in yourself, being positive and hopeful, and having positive people around you helps the journey dramatically,” said Robert.

“The ALL diagnosis was a bit of a shock as I was a very healthy person. I’d hardly been to the doctor in 26 years and the last time I’d been to hospital was when our son was born. I hadn’t had a Panadol for 15 years and suddenly I was having 47 tablets a day!

“I was given just weeks to live so started the chemotherapy immediately and I then had a stem cell transplant.

“Luckily, I reacted well to the transplant with only minor side-effects. It was the subsequent surgeries for my diverticulitis, diagnosed around the same time as the ALL, that really knocked me about but I’ve managed to bounce back and fighting fit these days.”

During the three weeks Robert spent in Sydney for his transplant, Kelly stayed in a Leukaemia Foundation patient and family accommodation unit nearby.

They are now big supporters of the Leukaemia Foundation, joining the Blood Buddies program and holding community fundraisers.

“As much as we are helping other people going through or about to go through a similar journey, it helps me understand my journey as well, and that’s given me a lot of strength and positive power. And I’ve met some lovely people along the way.”

“Doing the Kokoda Trail to Beat Blood Cancer would be a great way of improving both your mental and physical fitness all while supporting a fantastic cause that helps families like my own through their blood cancer journey.“

About the Hovon 150 Trial

About the Hovon 150 Trial

The aim of the HOVON 150 trial* is to recruit 968 patients – half with the IDH1 mutation and half with IDH2 mutation, from Europe, Australia and other participating countries.

For uniformity and to ensure there is no variation in the testing, screening and analysis of newly diagnosed patients’ bone marrow samples will be at a central international laboratory in Europe.

Assoc. Prof. Paula Marlton
Assoc. Prof. Marlton.

Samples collected in Australia will be quickly sent to Europe with the results returned to Australia prior to a patient starting treatment.

“Traditionally we have thought of AML as a medical emergency and endeavour to get treatment started as rapidly as possible,” said Assoc. Prof. Marlton.

“We will have to keep patients stable and the leukaemia under control for a few days while the testing is done prior to starting their definitive therapy.”

All patients selected for the trial will receive standard backbone chemotherapy treatment and, at the same time, either ivosidenib or enasidenib, depending on what mutation they have (IDH1 or IDH2).

Both drugs are tablets, which means they are easy to administer, and they are taken once a day, starting on the first day of chemotherapy.

Trial participants also receive ivosidenib or enasidenib with consolidation chemotherapy, and as a maintenance therapy for up to two years after chemotherapy is completed, or following a stem cell transplant if they go on to have one.

“That’s important because it may have the capacity to mop up any stray leukaemia cells that have escaped or were resistant to chemotherapy,” said Assoc. Prof. Marlton.

The trial will run for about four years.

For information, contact Assoc. Prof. Paula Marlton (07) 3176 2111 or speak to your haematologist.

* This trial is also open to people with high-grade MDS with excess blasts.

Making personalised care possible

Making personalised care possible

A new personalised service for people living with chronic lymphocytic leukaemia (CLL) has launched.

Wayne Clark
Wayne Clark benefited from the Cancer Concierge program

In Australia approximately 1300 people are diagnosed with CLL each year but around two-thirds are not calling for help.

So we launched a project to understand what people with CLL go through and how they can be better supported, sooner.

This project has now led to a new, personalised program called Cancer Concierge.

Cancer Concierge works with the individual to understand their experience with CLL and provides support throughout the challenges of the disease so they can live better with the condition.

Wayne Clark (pictured), diagnosed with CLL a decade ago, took part in the project.

“I really enjoyed being a small part of the committed team that worked on the project which will allow the growth, development and provision of wider support to people with CLL.”