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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

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.

You stepped up for Jack and his family in their darkest hour

You stepped up for Jack and his family in their darkest hour

Jack Mcilvar in May 2020

Stem cells are primitive cells likened to ‘baby’ cells, yet to decide what they want to be when they grow up. They turn into all the different blood cells, including the cells of our immune system.

But people with blood cancer or related blood disorders often need their stem cells replaced because of their disease or toxic treatments like chemotherapy.

Most stem cells donated to Australians actually come from overseas. So, what happens when unprecedented travel restrictions during a pandemic strangle the vital supply of stem cells?

Jack Mcilvar was 22 years old when he was diagnosed with a dangerous blood disorder called aplastic anaemia. He needed a stem cell transplant this year to save his life.

His father and carer, James, recalls how his son had battled aplastic anaemia for many months, spending weeks in intensive care and coming close to death. But there was light at the end of the tunnel: a stem cell donor had been found in Europe and Jack was finally well enough for a transplant.

His new live cells were prepared for a trip to Australia, to be accompanied by a necessary human courier. Meanwhile, Jack’s doctors in Adelaide began the normal process of destroying what was left of his immune system ahead of the transplant.

But then COVID-19 began to spread. Borders closed, couriers could no longer travel, transplants were deferred. Jack’s life-giving cells remained thousands of kilometres away.

“We just couldn’t believe our luck,” James recalled.

“Our son had no immune system left and was now one of the most vulnerable people in the world.

We’d got through so much and were at last ready for a transplant, but now there was a global pandemic.

“Doctors had to stop treatment because his stem cells were no longer guaranteed to arrive.

“Our family was in complete turmoil. Who could we reach out to? It was a feeling of utter helplessness.”

Then a chance encounter in hospital. One of our team, visiting other families with blood cancer, overheard James in the patient lounge and offered to help.

Jack’s stem cells did make it through.

“We’re still not sure how it happened but Jack’s transplant arrived, we think on one of the last flights in carrying cells,” James explained.  “We were lucky. It was such an incredible relief to us.”

Jack Mcilvar after his transplant

After weeks of difficult recovery following his transplant, and against all the odds, we’re thrilled to report Jack is now on the verge of going home. Thank you so much for being there for families like Jack’s during the coronavirus pandemic.

There are lots of challenges ahead but with Jack and thousands of others like him catalysing our efforts, we’re ready to take them on together.

Q&A: Dr Peter Diamond – our head of research

Q&A: Dr Peter Diamond – our head of research

Dr Peter DiamondHead of the Leukaemia Foundation’s National Research Program, Dr Peter Diamond discusses his role, priorities for the program, and exciting breakthroughs coming up in blood cancer research. 

What does your role as Head of Research involve? 

I work closely with leading researchers, research institutions and organisations to identify emerging treatment trends and Australia’s newest and most exciting blood cancer research and clinical trials. These opportunities are presented to the Leukaemia Foundation’s Board of Directors to decide which projects we will fund through our National Research Program. Our overall aim is to strengthen the blood cancer research ecosystem in Australia. A strong blood cancer community in Australia leads to better treatment outcomes and improved access for all people living with a blood cancer.

What does a typical day at work look like for you? 

I spend a lot of my time on the phone speaking to researchers and others about blood cancer research and new opportunities for the Leukaemia Foundation to be involved in. To be able to make informed funding recommendations, I’m always reading scientific literature and attending scientific/clinical meetings. Therefore, a lot of my day is devoted to keeping up-to-date with new trends in research and discovering where new breakthroughs in treatment will come from. Another increasingly important part of my role is to raise awareness about what research the Leukaemia Foundation is funding, what exciting breakthroughs and clinical practice changes this research is generating, and ensuring this information is communicated in a way that everyone can understand.

What excites you most about your role?  

I know that every significant improvement in treatment is a direct result of investment in research. By creating partnerships and funding the best research and clinical trials in Australia, we will make a difference for everyone living with blood cancer. Clinical research is moving at a rapid pace and I’m excited to be part of supporting this process; to develop better treatments and ultimately cures for blood cancer. I am also grateful to be a member of the Leukaemia Foundation’s Blood Cancer Partnership team which leads advocacy within the community and government. Our bipartisan approach was very successful in getting blood cancer on the political agenda during the recent Federal election.

What motivates you every day in your role?  

The thing that motivates me the most is seeing how what we do every day is helping someone. Sadly, I know all too well what it is like to have family members diagnosed with cancer, to see them go through treatment, to revel in the joy of every remission and to be devastated by every relapse. And, I’ve also seen some eventually lose their battle. I would like to live in a world where no one else watches their nieces and nephews grow up without a mum or dad, or a parent saying goodbye to their child because of blood cancer.    

Dr Peter Diamond with Prof Zannettino at SAHRMI
Dr Peter Diamond with Prof Zannettino at SAHRMI

What’s the biggest challenge you face in your role? 

There are so many great research projects, but we only have a limited amount of money to invest in research. If only we could fund all of them!  We actively partner with other organisations, to pool our resources and fund a greater number of projects. Our current research partnerships are with Cancer Australia, the Haematology Society of Australia and New Zealand, Tour de Cure, Leukemia & Lymphoma Society (U.S.) and Snowdome Foundation. We’re always looking for new partners to collaborate with who share our vision.  

What do you believe is the ‘next big thing’ in blood cancer research? 

There’s no doubt, it’s genomics and precision medicine. Genomics looks at your genetic makeup to understand what genetic mutations may be driving your cancer. And precision medicine, also known as personalised medicine, is where a therapy is tailored to an individual. This means people are treated with targeted therapies which are based on their genetic makeup and mutations and the treatment is not just based on their disease. An example is imatinib (Glivec®) which was one of the first targeted drugs on the market. It specifically targets a genetic mutation found in many individuals with chronic myeloid leukaemia (CML). This drug revolutionised CML treatment and has crossed over into treatments for some acute lymphoblastic leukaemias (ALL).  Imatinib started a wave of new targeted therapies over the past 20 years which are now at the forefront of research today.

In coming years, what will be the major focus on the National Research Program? 

Our commitment is to fund research innovations that drive rapid advancements in treatment, that discover new diagnostics and new therapies, and to enable Australian patients have access to the newest therapies available through clinical trials. The Leukaemia Foundation has a long and proud history of supporting research. Over the last 20 years, we have invested more than $47 million in research and clinical trials and have supported most major haematologists and senior blood cancer researchers in Australia at some stage of their careers. We will continue to support the development of tomorrow’s leading researchers and haematologists through our PhD scholarships and early career investigator initiatives while also investing in ongoing research and clinical trials. Over the next 3-5 years, we will support an exciting initiative – a precision medicine clinical trial program that has been piloted by the Garvan Institute of Medical Research (Sydney) for solid tumours. We will be extending the pilot to include blood cancers, in collaboration with Tour de Cure and expect to kick this off in early-2020.

Can you touch on the role/importance of clinical trials in blood cancer research?  

Clinical trials have always had an important role in blood cancer and are a critical part of the research and development of new treatments, as well as improving current treatments. By taking part in a clinical trial, individuals can access the latest treatments on offer, potentially many years before they are available on the Pharmaceutical Benefits Scheme (PBS). Unfortunately, less than 20% of Australians living with blood cancer have participated in a trial. The reason? People either don’t know a trial is available to them (because no one has ever talked to them about this opportunity) or they think clinical trials are only for people who are not responding to current treatment. I urge everyone to discuss clinical trials with their treatment teams. There may be something out there for you. 

What would you say to Leukaemia Foundation stakeholders (supporters/beneficiaries) who support the research program?

Once again, I would highlight that every significant improvement in treatment for people living with blood cancer has come from an investment in research. Without our supporters, we wouldn’t be able to invest directly in the important research work being undertaken by the best and brightest scientists and haematologists in Australia. This may be a small country, population-wise, but our scientific output and contribution is significant and of a very high quality. The harsh reality is that with our ageing population, the number of people being diagnosed with blood cancer will continue to increase. By 2025, it is predicted that every day, 50 people will be diagnosed with a blood cancer.  We need better, more targeted treatments and the only way we can achieve that is by investing in research and clinical trials.

What sparked your interest in the blood cancer and research fields? 

When I was a child, I was fascinated by biology and the inner workings of the human body. My family, like many others, has been touched by cancer many times and I wanted to do something that made a difference. This led me into science, a PhD in cancer immunology and a research career spanning almost 20 years, focused on understanding the genetic causes of cancer and the development of precision medicines as treatment options. After a three-year assignment working overseas, helping to implement HIV programs across South-East Asia, I started working for the Leukaemia Foundation and have been here for the last five years.

Who has inspired you in work and/or life and why? 

In my time at the Leukaemia Foundation, I have been inspired by some of the greatest scientific and medical minds in the country, but also draw inspiration from the unsung heroes. Those who work quietly in the background; the technicians, research assistances, nurses, therapists, social workers and, most importantly, our amazing volunteers who will probably never get their name in the media or be acknowledged with an Order of Australia Medal or Nobel Prize for medicine. Without their hard work and determination, we couldn’t provide the level of care and support we provide and receive in Australia, nor would we have the big breakthroughs in medicine to celebrate.  

What interests do you have that help create work-life balance?

My parents instilled in me a love of gardening and growing my own produce. As a child you could always find me with a shovel, digging something up, and covered in dirt.  Not much has changed, I still like to spend time pottering about and cooking with what I have grown in my garden. I live near the beach and love to get down there as much as possible too, especially in summer.  

 

 

 

Thank you for keeping Gavin’s family close during a bone marrow transplant

Thank you for keeping Gavin’s family close during a bone marrow transplant

Gavin Hill outside in the garden
Gavin Hill, ALL survivor

Gavin thought leukaemia was only a children’s cancer until the day his shock diagnosis completely changed his family forever.  

 In early 2019, Gavin and his wife Jen had just returned to their home in Bundaberg after travelling around Australia.  Their beautiful daughter Dusty has just started school 

Life was good.  

“Work was going well for me, and my partner, Jen finally had the opportunity to go back to Uni,” said Gavin.   

Just like many of us might think, Gavin suspected he was simply working too hard when he became run down and struggled to shake a couple of infections 

Jen encouraged Gavin to go to the GP to get checked out.  

Before he could catch his breath or make plans with the familyGavin was flown straight to Brisbane from his family home in Bundaberg and was diagnosed with acute lymphoblastic leukaemia (ALL). 

Gavin Hill
Gavin during treatment

It didn’t really mean much to me at that stage. I knew next to nothing about it,” admits Gavin.   

This is the moment support like yours comes alive. The moment just after his wife Jen and young daughter Dusty drive hundreds of kilometres to be by Gavin’s side, not knowing how long he’d be there or just where they could stay.  

We connected with the Leukaemia Foundation and were offered a unit at the Patient Accommodation Village and lots of great information.  

“It blew me away what the foundation was providing for the people in our situation every day of the week.”  

After two full cycles of chemotherapy failed, Gavin was lucky to find a suitable bone marrow donor from the Australian Bone Marrow Donor Registry.  

“There was no option B for me – if I didn’t get the transplant, I didn’t have a hope of surviving.”  

Gavin, Jen and Dusty continued to stay at the Leukaemia Foundation Village while he completed the 100-day recovery.  

Gavin and his family recently returned home to Bundaberg and slowly but surely, they’re returning to everyday life.  

You’re there for teenagers with blood cancer through every setback and every victory

You’re there for teenagers with blood cancer through every setback and every victory

Siobhan Hoy and her mum Sally
Siobhan Hoy and her mum Sally

After suffering a devastating relapse last year, Siobhan Hoy knew her Leukaemia Foundation family would be there for her again.

Siobhan was just 14 years old when she was first diagnosed with blood cancer in 2015.

“I was a fit, healthy teenager with a few bad bruises and a couple of bloody noses,” said the now 19-year-old. “A blood test and one phone call later and my life changed completely.”

Siobhan and her family stayed at a Leukaemia Foundation Patient Accommodation Village while she received life-saving treatment.

“My first diagnosis was really hard. I didn’t want to talk to anyone and felt so embarrassed and ashamed of my illness,” remembers Siobhan.

“I wouldn’t leave the room for anything until my mum convinced me one day to go down to see the Leukaemia Foundation support staff in the office.

“I was introduced to Maryanne, a Blood Cancer Support Coordinator you help to fund, and we just clicked straight away.

“There was no shame in what I was telling her. We would talk about all my teenage issues and she would laugh and reassure me through it all.”

When Siobhan relapsed in 2019, she felt assured by her first experience with the Leukaemia Foundation, knowing she would have access to all the supportive care she needed.

“I walked in that first day and said to Maree at the front desk: ‘I’m back, buddy, let’s do this!’,” laughs Siobhan.

“Maree and my mum, Sally, also became really great friends. They would go walking and work out in the gym together.

“That was really important for my mum’s mental health as well because being a carer is not easy.”

Siobhan is grateful to you for the family she built while staying at the village and keeps in regular contact with Maree and Maryanne.

“They see you at your best and worst, experiencing every setback and every victory together.

“I consider them my lifelong friends and actually really miss them now as happy as I am to be getting on with my life.”

Siobhan is now in remission – and we miss her, too!

You helped Jenny navigate her diagnosis

You helped Jenny navigate her diagnosis

Jenny and her son
Jenny with her son, Joshua who flew in from Western Australia to Queensland to be one of her carers.

Because of kind supporters including you, Jenny von Pein connected with the vital information she needed to find her best treatment and take on her blood cancer with confidence. 

Jenny was first diagnosed with a long-developing blood cancer called chronic leukaemia after a routine blood test.

“I got in contact with Sheila, a Leukaemia Foundation Blood Cancer Coordinator,” explains the 57-year-old. “I needed to go where the most valid knowledge was and, if necessary, where the clinical trials were.

“Sheila was excellent at talking me through the terminology, what to expect with the treatment and what it means to have a chronic leukaemia.

Having to travel four hours from her hometown for treatment, Shelia also helped Jenny to access a patient travel subsidy scheme and find accommodation.

“You don’t know what you don’t know. Shelia was just excellent; she was in constant contact with me throughout the whole journey.

“She has been a real leveler, easing my anxiety over the travel to treatment and through chemotherapy.

“We’ve already started to chat about whether I’ll be well enough to go back to work.

“I now know what I’m entitled to.”

Jenny is focusing on her recovery with her medical team monitoring her condition closely with weekly blood tests.

“It’s so important to understand your illness and talk to the Leukaemia Foundation to get direction and assistance on where you’re heading next with your disease,” said Jenny.

Jenny was recently told she is blood cancer-free and is feeling grateful for all the support she received to find the right treatment pathway for her.

Long-term research breakthrough

Long-term research breakthrough

Generous support helped deliver a research breakthrough that could lead to the first drug approved for patients with the rare blood disease, AL amyloidosis.  

Back in 2011, the Leukaemia Foundation invested in an international AL amyloidosis clinical trial, headed up in Australia by Associate Professor Peter Mollee.  

Assoc. Professor Peter Mollee
Assoc. Professor Peter Mollee is a consultant haematologist in clinical and laboratory haematology at the Princess Alexandra Hospital and chairs the Scientific Advisory Committee of the Australasian Leukaemia and Lymphoma Group (ALLG).

The trial was run in Australia by the Australasian Leukaemia and Lymphoma Group (ALLG) and took place in seven hospitals around Australia and in 14 countries internationally.   

“It enabled us to have enough money to bring the international trial to Australia,” said Assoc. Professor Mollee.   

“It wouldn’t have happened without that vital support.  

“This was a trial that investigated the effectiveness of a drug called bortezomib in people with AL amyloidosis.” 

You may have heard of bortezomib because it’s highly effective at treating a related blood cancer called myeloma.  

But AL amyloidosis is quite different to myeloma. The disease sees the build-up of amyloid proteins in tissue and organs of your body and can lead to fatal organ failure.   

This year, the results of Assoc. Professor Mollee’s trial were released.   

“You’re always looking for a good response from the organs, but also that you may prolong the patient’s life,” said Assoc. Professor Mollee.   

“The trial demonstrated the significant benefit of bortezomib in improving response rates and overall survival.   

“The 30% absolute improvement in survival is a staggering result almost never seen in blood cancers.”   

The project team are now awaiting publication of their results and will then look to submit the new treatment protocol to the Therapeutic Goods Administration, the regulatory body for medicines in Australia.   

Assoc. Professor Mollee is grateful to support like yours for ensuring people living with this rare disease have access to improved treatments.  

“The Leukaemia Foundation has provided invaluable support since the beginning and none of this would have been possible without the care and dedication of the community – thank you.”  

Hope for new blood cancer therapies

Hope for new blood cancer therapies

Dr Leisl Butler
Your support is driving the work of Dr Liesl Butler (pictured) as she strives for new blood cancer discovery.

Dr Liesl Butler, a junior haematologist at Monash University, is just one of the promising young blood cancer researchers boosted by kind supporters.   

Liesl was awarded a Leukaemia Foundation of Australia/Haematology Society of Australia and New Zealand (HSANZ) PhD Scholarship in 2020. 

Your generosity will support Dr Butler over the next three years to investigate the gene mutations and biological pathways that lead to the development of chronic blood cancers called myeloproliferative neoplasms (MPNsto develop more effective targeted therapies.   

“The MPNs are a challenging disease group which cause significant health problems and limit life expectancy; new therapies are desperately needed,” explains Dr Butler.

Liesl was “thrilled” to discover that she had been offered the PhD scholarship, overcoming what she considers the biggest hurdle for researchers: funding.  

“I feel privileged to have Leukaemia Foundation supporters backing my project – I am incredibly grateful to everyone,” said Dr Butler.  

“I look forward to what I can achieve over the next three years with the assistance of the scholarship and hope to make significant advances in blood cancer research.” 

You’re putting the human into blood cancer treatment

You’re putting the human into blood cancer treatment

Sherma Beasley
 Your kindness connected Sherma Beasley (pictured) with a lifeline of support

After being diagnosed with an aggressive blood cancer, Sherma Beasley was one of the many Australians left without access to the supportive care they need.   

“I had absolutely no idea what I was in for when I turned up to my first chemotherapy appointment,” said the 57-year-old.    

“I saw a different doctor nearly every time I was there and wasn’t told much about anything.”     

Feeling isolated and unsure, Sherma wasn’t getting the psychosocial, practical, nutritional or financial supportive care she desperately needed – nor did she know how to find it.     

Luckily, it was at that point your kindness reached out to change Sherma’s life forever. With your support Sherma was able to call on one of our Blood Cancer Support Coordinators, Jacqui.  

“Jacqui has been wonderful through all of this,” said Sherma. “She will always have a proper chat, is a great listener and doesn’t treat me like just another person to check off the list.   

“She gave me real encouragement and support, telling me what services I could access to make everything easier.   

“She fixed up my transport to the hospital, provided food vouchers and made sure I was asking my doctors to sort out the side effects of my treatment.”   

When we spoke to her Sherma had successfully completed six cycles of chemotherapy and was awaiting further blood tests.  

Blood Cancer Taskforce develops national plan

Blood Cancer Taskforce develops national plan

Australia icon

The Blood Cancer Taskforce has brought the Australian blood cancer community together to develop the first National Strategic Action Plan for Blood Cancer.

Development of the National Action Plan has involved consultation with clinicians, people with blood cancer, their carers and families, researchers, and a host of blood cancer experts.

Due for public launch in September, the National Action Plan is a once-in-a-generation opportunity to reduce the impact of blood cancer and re-imagine the way treatment and care of blood cancer patients is planned and administered across Australia.

As the Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report, released in 2019, so clearly demonstrated; the economic and personal costs of not acting with urgency on blood cancer are too great to bear.

The Leukaemia Foundation looks forward to working together with the blood cancer community to implement the National Action Plan and achieve zero lives lost to blood cancer by 2035.