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Oren fast-tracked to CAR T-cell therapy for rare Ph-like ALL

Oren fast-tracked to CAR T-cell therapy for rare Ph-like ALL

Diagnosed with a rare ALL sub-type last year, Oren London had only just begun chemotherapy before being accepted for CAR T-cell therapy in Australia.

Oren stands outside, smiling
Oren was the sixth child in Australia to have CAR T-cell treatment

A sports-loving 12-year-old, Oren had competed in a state swimming championship and weekend rugby matches in July 2019 when his mum, Fiona Snell noticed a series of changes in her son.

“Suddenly, he became really lethargic and lost motivation… he’d fall asleep anywhere,” explained Fiona.

“Then there was the bruising and weight loss, which I originally put down to puberty.

“After a sports injury in a footy game, he started having severe shoulder pain and he’d come out of physio sessions screaming.

“Then his appetite was almost non-existent, he began complaining of tummy aches, and was looking grey.”

After three weeks of these symptoms, with no improvement, Fiona took Oren to their local doctor in hometown Pottsville on the New South Wales north coast.

They were sent straight to hospital after the doctor noticed Oren’s spleen and liver were enlarged.

“We arrived at Emergency and got the red-carpet treatment straight through,” said Fiona.

Finally, after three hours of tests, the medical team told them that Oren had leukaemia.

“That’s when my whole world fell apart.”

Oren in hospital during treatment with mum, Fiona and dad, Jason
Oren in hospital during treatment with mum, Fiona and dad, Jason

Only a few hours earlier, Fiona had thought Oren would be given antibiotics and they’d be on their way.

“It was tough, especially having to break that news over the phone to my hubby, Jason,” said Fiona.

“I told him to get a bag ready and bring it up to the hospital with our daughters, Nylah, 9 and Amara, 10.”

Treatment resistance and organ failure

Oren and Fiona were medically transferred from the Tweed hospital to Brisbane, so Oren could begin chemotherapy immediately, and his diagnosis was confirmed as acute lymphoblastic leukaemia (ALL).

Four days into treatment, Oren’s kidneys started to fail, and he went to intensive care.

“The chemo started to attack all his organs and he developed tumour lysis syndrome*,” said Fiona.

Oren was put on dialysis to improve his kidney function and it took two weeks for his blood levels to improve enough to continue having chemotherapy.

“He ended up with high blood pressure, had seizures, and was sent back to the paediatric intensive care unit.”

CT scans and an MRI showed he had Posterior Reversible Encephalopathy Syndrome**.

Oren’s medical team became increasingly concerned that he had not achieved remission from his first month of treatment and ordered regular bone marrow aspirates and lumbar punctures.

Further studies of his bone marrow revealed that Oren had a mutation and sub-type of ALL, called Philadelphia-like ALL diagnosis (Ph-like ALL).

“We were told this particular mutation is quite strong and rare,” said Fiona, and this explained his resistance to chemo.

Preparations began for Oren to have a bone marrow transplant and he was set up to have full body radiation.

“His sister, Amara, was an exact donor match,” said Fiona.

Then, suddenly, Oren became a successful candidate for CAR T-cell therapy.

Fast-tracked to CART-cell therapy

Younger sisters, Amara, left, and Nylah, in hospital with Oren
Younger sisters, Amara, left, and Nylah, in hospital with Oren

Fiona said that Oren’s case, being so rare, was put before the board of CAR T-cell experts at the Royal Melbourne Hospital for consideration for the therapy, Kymriah® (tisagenlecleucel), which had only recently become available in Australia

“I had learned a little bit about CAR T-cell therapy through my research of Ph-like ALL,” she said.

“I understood it was normally for kids that had gone through two and a half years of treatment, had already tried a bone marrow transplant, and had a second or third relapse.

“They had to know Oren wasn’t going to survive the two and a half years of preliminary treatment for him to be approved for CAR T-cells after only three months of treatment.”

The London family was notified in November 2019 that Oren had been approved for the new form of immunotherapy and they travelled to Melbourne to have his T-cells collected.

“Oren was the first child from Queensland Children’s Hospital and the sixth child in Australia to have CAR T-cell treatment,” said Fiona.

“The Australian government had just given the funding and we were so lucky to have a supportive oncologist who really went to bat for us.

“His T-cells were sent to the U.S., to have the CAR-receptor put on them, which took about four weeks.”

During that time, the Londons returned to Brisbane and Oren had maintenance chemo before going back to Melbourne in January 2020 so Oren could receive his now ‘super-charged’ T-cells.

“We stayed for seven weeks and I don’t want to say it was a walk in the park but compared with what he had been through with the chemo, it was amazing,” said Fiona.

“He had a small reaction of high temperatures but when they did the bone marrow aspirate and a lumbar puncture 30 days later; we had hit remission.

Oren on the cricket field, prior to his leukaemia diagnosis
Oren London on the cricket field, prior to his diagnosis with a rare subtype of ALL

“I got my boy back. I now have my smiling, eating, walking, talking 13-year-old back.”

Home to a pandemic

On February 23, the family returned to Pottsville.

“The girls had just returned to school full-time, and Oren part-time, when the COVID-19 pandemic hit,” said Fiona.

“I took the kids out a week before the schools made that decision to close. We had been through too much for too long to take any chances.

“It was a great time for us to bond again in our own home for the first time in six months. It really brought us back together as a family.

“Now the kids are back at school and Oren has started footy training and taking his position on the field for a full game.”

Looking to the future

For six months after his CAR-T treatment, Oren had monthly check-ups and bone marrow aspirates in Brisbane, and for the rest of his life Oren will need regular intravenous immunoglobulin therapy (IVIg) due to his non-existent immune system.

“We had hoped to switch to subcutaneous immunoglobulin which he could have injected weekly,” said Fiona, but unfortunately this was not possible, due to the current COVID-19 border crossing issues.

“At the one-year mark, in January 2021, we are due to return to Melbourne for his annual check-up.”

Improving access to CAR T-cell therapy

After their experience, Fiona is keen to see CAR T-cell therapy become a frontline treatment for others diagnosed with childhood ALL.

“If this is how they can treat kids with ALL down the track, and not have to go through any of that chemo for two and a half years, it will change the game completely,” said Fiona.

Oren holds a rugby magazine
Oren is a sports fanatic and loves his rugby

“We were very lucky because a year ago we would have had to fund a trip to the U.S. to even get on the treatment and I’ve heard of people selling their houses to do so.

“To my knowledge, it can be up to $500,000 to access CAR T-cell therapy there and the ongoing costs for IVIg are expensive.

“Research is progressing at such an impressive rate and I’m so thankful for all those people in the past that have been through the trials and testing to get CAR T-cell treatment to the place it is now.”

Click here to read about an exciting new research project into Ph-like childhood ALL that the Leukaemia Foundation is funding.

*  Tumour lysis syndrome occurs when a large number of cancer cells die within a short period, releasing their contents into the blood.

**   Posterior reversible encephalopathy syndrome is a rare condition in which parts of the brain are affected by swelling, characterised by a headache, seizures, altered mental status, and visual loss.

Drug discovery has remarkable potential for high-risk childhood leukaemia

Drug discovery has remarkable potential for high-risk childhood leukaemia

Exciting research is laying the groundwork to develop a promising new targeted therapy for aggressive subtypes of childhood leukaemia including infant acute lymphoblastic leukaemia (ALL).

Dr Michelle Henderson in the lab
Dr Michelle Henderson: “It’s going to become a reality that across the country every child’s cancer will be sequenced

Lead investigator, Dr Michelle Henderson is a senior scientist, project leader and joint Research Manager of Molecular Diagnostics at Sydney’s Children’s Cancer Institute.

Before moving to the Children’s Cancer Institute, Dr Henderson spent 10 years working on the genetics and molecular biology of breast cancers at the Garvan Institute of Medical Research.

“Fourteen years ago, the opportunity to move to the Children’s Cancer Institute came up,” explained Dr Henderson.

“After spending years studying individual genes involved in cancer, I wanted to take a step closer to the clinic where I could potentially discover new treatments and have a more direct impact on people with cancer.”

While major research advancements have significantly improved survival rates in childhood leukaemia, Dr Henderson and her team are working to target certain subtypes of childhood leukaemia that still have very poor prognoses.

These include children who fail induction treatment, relapse during treatment or whose leukaemia harbours chromosomal rearrangement of the Mixed Lineage Leukaemia (MLL) gene*, an abnormality that occurs in 90% of infant ALL, with a survival rate of less than 50%.

“It can be an extra challenge with children as their bodies are still developing and these chemotherapeutic agents that work so well for leukaemia can still be very harmful to the patient,” said Dr Henderson.

“If it’s a more aggressive cancer then that child will receive more aggressive treatment and that can affect them later in life, leading to physical problems such as heart disease, osteoporosis, infertility, obesity, or even the risk of a second cancer.

“This presents an urgent need for the development of novel treatment strategies incorporating more selective, targeted therapies, allowing for a reduction in chemotherapy dosage and toxicity.”

For the past 10 years, Dr Henderson’s lab has collaborated with a lab in Buffalo, New York, conducting ‘screens’ with the aim of finding new drugs which specifically kill cancer cells without affecting normal cells.

Together they have discovered a new drug, OT-82, which has ‘remarkable’ potential to improve treatment in aggressive childhood leukaemia.

Dr Henderson’s research was awarded a Priority-driven Collaborative Cancer Research Scheme (PdCCRS) grant in 2019 to further develop this therapy.

This grant was co-funded by the Leukaemia Foundation, The Kid’s Cancer Project and Cancer Australia.

“This drug, OT-82, blocks the production of a cellular biochemical called nicotinamide adenine dinucleotide (NAD) which rapidly dividing cancer cells can be dependent on for energy,” said Dr Henderson.

“NAD is also a co-factor for a number of enzymes that help the cell repair itself and so leukaemia cells can require a lot of it because they’re continually growing and need to repair themselves all the time.

“Based on the knowledge that cancer cells depend on NAD more than normal cells, researchers have tried for many years to design a compound that actively targets and inhibits production of NAD. But a suitable compound was yet to be found.”

Although not looking to target this pathway in particular, Dr Henderson and her collaborators in the U.S. came upon such a compound through a screening strategy aimed directly at blood cancer cells.

“We were surprised when the compound that came out of the search appeared to be an inhibitor of an enzyme called NAMPT (nicotinamide phosphoribosyltransferase), which is necessary for producing NAD in the cell but whose association with blood cancers was unknown,” she explained.

“This particular compound universally kills blood cancer cells, but the normal blood cells just go into a pause.

“The normal blood cells don’t die, they are just in pause and then when you stop treating them, they rejuvenate again, whereas the cancer cells don’t.

“It’s interesting that we’ve come across it through a completely blind approach of just screening thousands and thousands of compounds and found one that targets blood cancer cells.

“This compound seems to be very well tolerated so far in adult trials and is earmarked for going further into paediatric trials.”

With this grant, Dr Henderson and her team are laying the groundwork for these paediatric trials, by determining which children could be most responsive.

“Part of our research is to determine exactly which subtypes of leukemia will respond, both on a broad, phenotype level, and at a molecular level, to find which genes are expressed in that particular cancer,” said Dr Henderson.

“We want to have a set of biomarkers, or subtype markers, that say if a patient has this cancer and it expresses this gene or mutation, they are more likely to respond to OT-82.

“So far, we have found a set of very responsive patient samples that each have mutations in DNA repair genes.

“We think that when they have a weakness in their DNA repair, with the cancer cell having to grow so rapidly and requiring NAD for repair, that’s when they are particularly responsive to OT-82.

“We are also looking at how OT-82 can be used in combination therapy to promote the response to other drugs currently being used for leukaemia treatment.”

The impact of this project is further enhanced by a collaborative grant recently awarded to the Children’s Cancer Institute to deliver personalised medicine to every child in Australia.

“It’s going to become a reality that across the country every child’s cancer will be sequenced,” said Dr Henderson.

“Such a completely individualised approach to treatment means that OT-82 could have an incredible impact on patient survival outcomes.”

Inhibiting NAD also appears to be relevant to some other cancers that depend on the same pathway.

“They might be solid tumours like sarcoma or brain tumours with certain genetic mutations you can screen for that cause dependence on this particular pathway,” said Dr Henderson.

The next big challenge for the research team will be gearing up for a paediatric leukaemia clinical trial.

“That’s why this funding from the Leukemia Foundation, The Kid’s Cancer Project and Cancer Australia is so important,” said Dr Henderson.

“Even though a relatively small number of children may have these high-risk leukaemia subtypes, it will have a significant impact on survival outcomes for this group and may be applied across other cancer types.

“The whole team is so thankful to have the opportunity to gather this supporting evidence and make a real case for OT-82 to be taken to clinical trial stage for these deadly childhood leukaemias.”

*Also referred to as Mixed Lineage Leukaemia Gene Rearrangement (MLL-r). This occurs when a piece of DNA is swapped with another chromosome which results in two different genes being abnormally joined together. The resulting protein can no longer control the development of the blood system and blood cells grow out of control, resulting in leukaemia.

From PhD in Melbourne to postdoc in New York

From PhD in Melbourne to postdoc in New York

The Leukaemia Foundation’s National Research program has supported the careers of the brightest researchers and clinicians, like Matthew Witkowski, for almost 20 years.

Matthew Witkowski
Matt Witkowski is investigating what drives ALL cells to be resistant to therapy and how their environment influences relapse

His research is a prime example of how critical research funding is to understand the biology and genetics of blood cancers and to developing new treatments.

A young Matt with medals and trophies he and his two brothers had won, including the under 11s footy grand final for Diamond Creek in 2001.
Matt with medals and trophies he and his two brothers had won, including the under 11s footy grand final for Diamond Creek in 2001

Matt’s career trajectory was kick-started when he won the under 11s footy grand final for Diamond Creek in Victoria! He has since moved from sport to science and, after completing his Honours at the Walter and Eliza Hall Institute (WEHI) in Melbourne, was awarded a PhD scholarship from the Leukaemia Foundation.

Now he’s working as a postdoc scientist at the New York University School of Medicine in the U.S. and his sights are focused on improving the effectiveness of CAR T-cell therapy.

When ALL News spoke to Matt, he had just presented on The relapsed B-cell acute lymphoblastic leukaemia immune microenvironment and won the first prize post-doctoral Eugene Cronkite 2019 New Investigator Award at the International Society for Experimental Haematology conference in Australia.

Matt Witkowski and mum Tina
Matt Witkowski with his mum, Tina Witkowski, at the Walter and Eliza Hall Institute during his PhD scholarship

He explained that back in 2011, when he applied for a PhD scholarship, “the Leukaemia Foundation was very competitive, but I was lucky enough to receive it”.

Matt’s PhD, from January 2012 to December 2014, was valued at $120,000.

“It was my first scholarship. It was a big deal for me, and relieved a lot of the stress,” said Matt.

“You knew someone cared about what you were doing as a student and that it was worth investing in. That’s critical at the point when you are learning the lay of the land in science.”

Matt did his PhD in lab of Dr Ross Dickins which was then at WEHI*.

“The Leukaemia Foundation was a big supporter of our lab and was a constant support and funding stream. Our lab thrived on that bit of stability,” said Matt.

“You do a lot of work all the time, in science. You’re constantly working, so you don’t want to worry about funding, especially when the Australian government can swing around in terms of how much they are investing in science.

Matt Witkowski, right, with from left, Grace Liu, Ross Dickins* and Mark McKenzie** from Dr Dickins’ lab at the Walter and Eliza Hall Institute
Matt Witkowski, right, with from left, Grace Liu, Ross Dickins* and Mark McKenzie** from Dr Dickins’ lab at the Walter and Eliza Hall Institute

“We were a small lab with one post doc, two students, and Ross as well. It was one of the few acute lymphoblastic leukaemia labs at WEHI at that time,” explained Matt.

“We were working on ALL because it is the most common cancer in kids and the most common cause of cancer-related death in children. I work on B-cell leukaemia, which is the most prevalent form of ALL.

“Students are the powerhouse of a lot of labs, especially ours.

“The other student in the lab, Grace Liu [also a Leukaemia Foundation three-year PhD scholarship recipient (2010-2012)] and I were producing a lot of the data.

“We both got meaningful papers out of it, which put us in good stead for building a career in the field” said Matt, and this was important for his career going forward.

Matt was investigating genes defective in leukaemia patients who showed resistance to chemotherapy, which would suggest that these particular genes dictated a patient’s ability to respond to chemotherapy.

“My work has focused on the Ikaros gene and defining how Ikaros interacts with other genes in a leukaemia cell to drive chemotherapy resistance and cancer development,” he said.

“By understanding these interactions, explanations for why patients who lack the Ikaros gene do not respond to therapy may become clear.

“Ultimately, this may lead to alternative therapy for ALL patients who would otherwise not respond to common chemotherapeutics.”

Matt had papers published in both Leukemia and The Journal of Experimental Medicine, and prior to completing his PhD, he went to a conference in Colorado in the U.S. where he met his current boss, Iannis Aifantis, an internationally recognised immunologist and cancer biologist, who heads a laboratory at New York University (NYU).

“He had read our papers and said, ‘do you want to come to New York for an interview in the lab?’.

“To be honest, New York wasn’t on my list. It seemed a little daunting. However, Luisa Cimmino, a previous postdoc with Ross Dickins, who was in the Aifantis lab, said ‘come to New York, it is really nice here’.

And so Matt went to further his career and research in New York. He went from a lab of four people to being a postdoc in a lab of 29! He’s still there now, continuing his work in ALL, “and it has been great ever since, just working away”, he says.

“I was able to extend on what I did in Ross’ lab. I worked in the same disease, ALL, but new technologies were coming out from the States and I could use them straight away.

“Leukaemia is a very complicated disease. You have a cell that is abnormal and it grows and grows in your bone marrow and spreads.

“What we did in Ross’ lab during my PhD, was provide really valuable information about what the genetic changes were in cells that made them transform into leukaemia. We used very novel tools to do that.

“Ross had brought that back from America and we took advantage of that to understand what underpinned leukaemia emerging and causing disease, and treatment resistance.

“When I went to America, I thought; how does the bone marrow itself influence the leukaemia? It obviously doesn’t grow on its own. It grows by interacting with everything around it.

‘When a patient presents with the disease that is throughout their bone marrow, then they get treatment, a small amount of leukaemic cells will just hang around and eventually the patient may relapse with the disease.

“My question was, ‘is there something that actually drives that small population of cells that are resistant to therapy to hang around, and what is the influence of the environment on these cells that would mean they would eventually not respond to therapy and inevitably cause relapse in these patients’.

“I was able to do a lot of that in the U.S. where we had new technologies where we could look not only at the leukaemic cell, but also everything surrounding it.

“We could deconstruct and pull apart the whole landscape of the bone marrow and understand all of the components and how they were talking to the leukaemia to keep it alive.

“What we have been able to do at NYU is use novel technologies to understand the whole system and how it evolves over time. We think we might be able to intervene with how the environment keeps the leukaemia alive, as a means of improving therapy,” said Matt, first author on a paper about this work that was published in Cancer Cell in June 2020.

“If you just stop these populations of cells from supporting leukaemic cells, you might be able to improve therapies that are already quite good in leukaemia.

“By just taking into consideration that you don’t just treat the leukaemia, sometimes you have to treat the things around it that would potentially support it surviving. This is a new paradigm in a lot of therapies.”

Matt has continued to keep in touch with an Australian ALL patient, India Papas, who he met through the Leukaemia Foundation when she was young.

“Every so often I ask Jodie [her mum] how India is going, and she seems to be doing really well…she has grown up.”

Matt said, looking to the future, his holy grail was to understand why some patients fail CAR T-cell therapy.

“This therapy harnesses a patient’s own immune cells to kill their tumour. It was originally utilised at the Children’s Hospital of Philadelphia and St. Jude Children’s Research Hospital (Memphis) as a way to treat B-cell leukaemia.

“Initially, it looked great. It looked like taking T-cells out of a patient and repurposing their own cells to kill tumour cells was going to be a really nice curative treatment.

“But it turns out that now we are a few years out from those initial trials, they [CAR T-cells] are not as effective as we thought. There are patients relapsing.

“It is an expensive therapy as well. In the U.S., it costs USD500,000 for a single treatment with this drug.

“There have to be ways to mitigate the relapsing that emerges from this. Not all of them are because of the drugs or because the B-cells they are targeting are naturally resistant. Sometimes there are other mechanisms.

“My goal is to start a group that tries to understand why patients fail this therapy.

“My initial work, in understanding how the bone marrow is composed, provides a good platform to understand how the environment informs how these new immune therapies are working.

“That is the goal in my immediate future, to start my own group where I can do this… to be around these therapies and take advantage of the fact that patients get biopsies which lets us see how they perform over time and why they don’t respond or why they do.

“There is also something called Bi-specific T-cell engagers. They hook leukaemic cells up to cells in the body that, if activated, kill leukaemia cells.

“There is a drug, called blinatumomab, that has done pretty well in this kind of field, where you are depending on the environment to kill the cells by using CAR T-cells and blinatumomab.

Matt Witkowski holding up a fish and fishing line
During a vacation in Maine, Matt threw in a line and came up trumps

“Once we understand what the environment is and how it influences the leukaemia cells, it might inform us which patients may not respond to these drugs. We have made the assumption that the environment is going to allow these drugs to work, but we don’t know that,” said Matt.

Matt said he was open to potentially moving back to Australia to start his own lab or to do that somewhere in America.

“I may come back to Australia but I’m not definitive about anything at the moment,” he said.

* Dr Ross Dickins subsequently moved to the Australian Centre for Blood Diseases at Monash University.

** Mark McKenzie was supported by a three-year Leukaemia Foundation Postdoctoral Fellowship (2010-2012).

Leukaemia Foundation to host virtual seminars for National MPN Awareness Day today

Leukaemia Foundation to host virtual seminars for National MPN Awareness Day today

Thursday September 10, 2020

Australians living with the rare blood cancer Myeloproliferative Neoplasms (MPN) will today be able to connect through a new virtual seminar being hosted by the Leukaemia Foundation as part of National MPN Awareness Day.

Working in partnership with MPN Alliance Australia, the free live seminar will include four speakers from Monash University, The University of Western Australia, Cancer Council Queensland and a patient advocate from Sydney.

Leukaemia Foundation Acting CEO Alex Struthers encouraged those Australians and their families living with MPN to sign up to the free live event and unite with other Australians experiencing the blood disorder.

“This event will be streamed live, enabling attendees to gather together virtually to hear some of the latest insights into the disease to better inform their diagnosis and treatment, and break down some of the barriers they may face in accessing this information,” Ms Struthers said.

Myeloproliferative neoplasms (MPN) are cancers that start in the bone marrow, where blood cells are made. In MPN, the bone marrow makes too many of one or more types of blood cells (red blood cells, white blood cells and/or platelets). These cells change the thickness of the blood. They also crowd the bone marrow and then it can’t make enough healthy blood cells.

There are seven types of MPN, diagnosed using blood tests and a bone marrow biopsy. Some forms can transform into other types of MPN or into acute myeloid leukaemia (AML) – one of Australia’s deadliest blood cancers with a  five-year survival rate of just 28 per cent1.

The Leukaemia Foundation has invested nearly $700,000 into research of MPNs as part of its $50 million National Research Program and continues to advocate and support all Australians living with more than 120 different blood cancers across the nation.

Currently, the Leukaemia Foundation is funding the research of Dr Liesl Butler – a junior haematologist based at the Centre for Blood Diseases at Monash University in Melbourne. Find out more about Dr Butler’s research here.

Virtual Seminar Details

Date: September 10, 2020

Time: 12 noon AEST

Where: Online via Microsoft Teams Live

Register here


Prof. Andrew Perkins from Monash University. Topic: Current clinical and research interests – rundown on how diagnosis and treatment is progressing and emerging therapies.

Prof. Wendy Erber from University of Western Australia. Topic: Why do Myeloproliferative Neoplasms Progress to Fibrosis?.

Prof. Peter Baade from Cancer Council QLD. Topic: How does the burden of MPN in Australia vary by where people live.

Helen Williams from Sydney. Helen is newly diagnosed with PV and will be discussing her experience from a patient perspective.

More about MPN

Myeloproliferative neoplasms (MPN) are a rare group of blood cancers.

The MPN Polycythaemia vera is diagnosed in an estimated 250 Australians each year, essential thrombocythaemia around 200 and myelofibrosis an estimated 150. Rarer sub types are diagnosed in less than 50 Australians each year.

MPN is more commonly diagnosed in people over 50, although it can rarely occur in younger people, every rarely in in children.

Many people have no symptoms when they are first diagnosed with an MPN and the disease is often picked up accidently during a routine blood test or physical examination.

When symptoms do occur, the develop gradually over time and can include headaches, blurred vision, fatigue, weakness. Dizziness, itchiness, night sweats and raised blood pressure.

Most people with an MPN have no family history of the disease.

Find out more about MPN here.

– ENDS –

One in 110,000: Neda’s Story

One in 110,000: Neda’s Story

Hi, I’m Neda and I’m just one of the 110,000 Australians currently living with blood cancer.

Neda Master, 47, Myeloma with her partner in a Leukaemia Foundation unit
Neda with her husband, Todd

Neda, who recently stayed in one of our accommodation centres while undergoing blood cancer treatment, has a special message to share with Leukaemia Foundation supporters.

On behalf of every family battling this devastating disease – I want to say thank you and tell you about the incredibly vital role you’ve played in all our blood cancer stories this past year.

My own story started nearly a decade ago. Complications after my pregnancy resulted in abnormal bleeding, chronic pain, bad headaches and constant respiratory issues.

But I just kept being told I had severe anxiety and needed to sleep – well, of course I was anxious, I knew there was something seriously wrong with me…

Years later, finally a (brilliant) doctor asked for MY story and that’s when I was set on the right path to diagnosis.

Just days before boarding a plane to the U.S. I received the phone call;

“Mrs Masters, do not get on that plane, if you do…you might die.”

I was diagnosed with the incurable blood cancer, myeloma, and I had the worst type. I would need chemotherapy and then a tandem stem cell transplant to survive.

This is the first way you are making a difference in my life. Your donations are hard at work supporting research in early detection and prevention.

The funny thing was, I wasn’t even scared at this point. I was just relieved to know I wasn’t going crazy and I could finally start working towards a healthy life.

Myeloma is not an easy disease to diagnose either. At first I was told I had lymphoma however, the diagnosis changed to myeloma an hour before my first treatment.

Woman in a headscarf looks out the window in a Leukaemia Foundation unit
Neda had to move away from home to receive her blood cancer treatment

Your support is giving me hope that others like me could be diagnosed sooner. Because of you, right now a Blood Cancer Taskforce is hard at work, concentrating on better diagnostics and educating more health care professionals about the disease so it can be picked up sooner.

After my diagnosis I was told I needed to be in the closest capital city as soon as possible to begin treatment.

So many questions. How were my son and husband going to cope? Where were we going to stay? How sick am I going to get?

Thankfully, in my first week in hospital I received a visit from my Leukaemia Foundation Blood Cancer Support Coordinator, Sheila.

My first ‘Angel of Mercy’, Sheila helped me navigate all the big questions. She told me what was coming, the best haematologists to seek out and all the amazing services I could access through the Leukaemia Foundation.

Because of you, in the past year other individuals and families like me have been visited by someone like Sheila over 26,542 times offering emotional support and assistance through the shock of a blood cancer diagnosis.

Then there’s the accommodation – could you imagine if my husband or mum had to pay for a hotel for weeks on end while I received treatment?

We were offered a safe and clean apartment, completely free of charge and close to the hospital, with plenty of people around to assist us with whatever we needed.

But it’s not only about the money, it’s about keeping families together – you ensured that 837 families in the past year weren’t kept apart by a diagnosis and could stay close while their loved one faced the biggest challenge of their lives.

My 15-year-old son, Sana, also wanted to be close to me while I had treatment.

Sweet Nicole from the Leukaemia Foundation, another angel you sent me, told me about the hospital high school he could attend close to our accommodation and sorted out the enrolment for me.

That really meant the world to my husband, Todd, and to me – it was so important we all stay together during these tough times.

Speaking of Todd, he’s also benefitted greatly from your kind support attending carer sessions, myeloma forums and support groups hosted by the Leukaemia Foundation.

And it doesn’t matter where you live with so many resources now available online to help people living with blood cancer and their families navigate a diagnosis. Again, this was all made possible by you.

At the time of writing this, I am recovering from my second stem cell transplant and am full of hope and strength knowing you are behind me all the way.

I am now on the drug, Revlimid® which earlier this year was listed in on the Pharmaceutical Benefits Scheme (PBS) here in Australia.

Before, I wouldn’t have been able to afford the $1000 a month it costs for the drug and my doctor said I will need it to stay in remission.

Thank you for your incredible support in getting this drug listed on the PBS, with the Leukaemia Foundation advocating for the medical needs of people like me.

You might not realise, but last year your support also helped three new medicines to be listed on the PBS, ensuring people living with blood cancer can access affordable treatment.

So that’s my story so far. Thank you for being part of it.

Thank you for being there when it matters most

Thank you for being there when it matters most

Having lived through her own diagnosis of acute promyelocytic leukaemia (APML), the Leukaemia Foundation’s new Chairman, Dr Carrie Hillyard, has a special thank you message to our generous supporters around the country.

Chair of the Leukaemia Foundation, Dr Carrie Hillyard
Leukaemia Foundation Chair Dr Carrie Hillyard is thankful for the generosity of supporters

“We’ve all heard a lot of the same words this year: “challenging”, “unprecedented”, “pivot”.

In fact, you may know from experience that these very words sum up the blood cancer experience on any given day.

From the moment that diagnosis is pronounced, life certainly takes an “unprecedented” turn into the unknown. Family plans are forced to pivot day-to-day.

With all that Australia has faced this year, it’s meant so much that you are standing up and offering your support and kindness, particularly when families facing blood cancer are feeling even more vulnerable.

Even during bushfires and a global pandemic, blood cancer doesn’t stop, so neither can we.

Like you, I’ve observed the Leukaemia Foundation’s dedication to service for many years now and am privileged to now step into the Chairman role.

I feel deeply proud to succeed the long-standing and well-loved Chairman, Beverley Mirolo OAM, as we continue towards a bold new goal of zero lives lost to blood cancer by 2035.

Such a lofty ambition wouldn’t be possible without your generous support  and I’m grateful for your continued help in conquering blood cancer.” ”

– Dr Carrie Hillyard  AM
Leukaemia Foundation Board Chairman

Davina’s selfless generosity could spark research breakthrough

Davina’s selfless generosity could spark research breakthrough

Before tragically losing her life to incurable blood cancer in 2018, Davina Sickerdick made a lasting commitment to others facing this devastating disease.

Davina Sickerdick standing outside Buckingham Palace in London
Davina Sickerdick pictured in London

Davina was diagnosed with myeloma after persistent back pain raised concern with her GP.

Myeloma, also known as multiple myeloma, affects more than 140,000 people worldwide each year – last year more than 2,000 Australians were diagnosed.

Davina’s partner of 22 years, John, remembers the relentless radiation, chemotherapy and stem cell harvesting that followed her diagnosis.

“There was never really a break with it,” said John. “When you have myeloma you are permanently on chemotherapy, meaning hospital visits every month and blood tests at least twice a week.

“She really had a terrible time with it, various complications along the way and she was allergic to some of the drugs.”

With her health getting worse and faced with the reality she may not survive, Davina decided she wanted to help others.

“Davina was that sort of person,” remembers John.

“She couldn’t do enough for anyone, and nothing was too much trouble.”

Davina always considered herself to be an ordinary person but her family and friends thought of her as extraordinary, full of life, colourful and loved anything that had a little “sparkle”.

“She was the one who took the initiative and contacted the Leukaemia Foundation to discuss the process [of leaving a Gift in Will].

“They armed us with the correct wording and made sure we were well supported to make our wishes clear and formalised.

“My Will reflects the same thing as Davina’s – I will be directing money towards helping more people battling blood cancer through the work of the Leukaemia Foundation.”

Professor Andrew Zannettino will work to eliminate the disease with Davina’s kind gift

Davina’s kind gift has funded strategic research projects looking to better understand myeloma and why so many patients relapse after initial treatment.

With Davina’s gift, Professor Andrew Zannettino from the University of Adelaide has embarked on a three-year study to target certain cells which could eliminate this disease.

“The impact of this gift cannot be underestimated,” said Professor Zannettino.

“Davina’s generosity means we can look for new ways of beating blood cancer and hopefully ensure no one else has to experience the same struggle.”

John is looking forward to seeing real outcomes for families battling blood cancer and encourages others to consider updating their Will.

“I just hope more research can be done, and not just in myeloma, I know there are many other blood cancers needing the same type of support,” said John.

“I feel very proud and happy to think that her gift could spark a real breakthrough, we always spoke about making a difference with our estates and I hope this can make a really positive change for society.”

More than 50% of Australians over 18 don’t have a Will in place (Moneymag, Feb, 2019). Make 2020 your year to double check your Will is sorted and consider leaving a lasting impact for people living with blood cancer. If you would like to know more about leaving a gift to the Leukaemia Foundation, please contact Emma Quigley, Gifts in Wills Officer on 1800 620 420 or email

Talk to Emma now

Meet Prof. Tim Hughes from the Blood Cancer Taskforce

Meet Prof. Tim Hughes from the Blood Cancer Taskforce

Taskforce member Professor Tim Hughes
Taskforce member Professor Tim Hughes

Tim is Cancer Theme Leader with the South Australian Health and Medical Research Institute (SAHMRI) and Consultant Haematologist at the Royal Adelaide Hospital.

What drives your passion to help people with blood cancer?

Blood cancers, if treated appropriately, potentially lead to a normal quality, normal duration of life. The stakes are so amazingly high so that increases the satisfaction of developing better therapies and the motivation to continue to make further improvements in all the blood cancers is very strong.

Why did you want to be part of the Taskforce?

I think the Blood Cancer Taskforce is going to have a big impact on the way we manage blood cancers over the next 20 to 30 years, so to be able to contribute to that is going to be a huge honour and a huge opportunity.

How do you think the Taskforce might improve the lives of people with a blood cancer?

I think the strength of the Blood Cancer Taskforce is that it is looking at the picture not from one, narrow perspective but from the broadest of perspectives, including how we communicate with patients, how we work together as clinicians to improve outcomes, how we improve our recruitment to trials. It’s looking at the broadest questions that we can possibly ask.

You’re investing in the researchers of tomorrow, today

You’re investing in the researchers of tomorrow, today

Thanks to our supporters, Dr Khai Li Chai was recently awarded a Leukaemia Foundation PhD Scholarship, through the Haematology Society of Australia and New Zealand (HSANZ).

Dr Chai is a specialist clinical and laboratory haematologist at Monash University undertaking vital research into blood cancer.

Your generosity will support Dr Chai over the next three years to investigate people living with a range of blood cancers: chronic lymphocytic leukaemia (CLL), non-Hodgkin’s lymphoma (NHL), multiple myeloma, and individuals who have undergone stem cell transplants.

Khai Li Chai
Dr Khai Li Chai

Her research will focus on hypogammaglobulinemia – a condition where the body does not produce enough antibodies and is linked with serious infections. Sadly, it is a major cause of mortality and illness in affected patients.

Her work will explore antibody therapy to prevent and treat infections in patients, to ultimately lead to a better standard of care.

You can read more about her project and the other bright young minds our supporters are helping here.

Light the Night in your own special way this year

Light the Night in your own special way this year

Those of you who’ve been part of Light the Night over the years, know what an incredible experience it is.  The connection with others.  Shared lived experiences.  United in hope.  It takes your breath away.

A family holding Light the Night lanterns, gathered in their backyard at night
Light the Night in your own special way this year

In a year like no other, Australia’s most beautiful blood cancer community event has been thoughtfully re-imagined to allow us to come together in a new and wonderful way.

This year, you are invited to shine a light on blood cancer in your own special way by hosting a twilight gathering with your loved ones on Saturday, 10 October.

How you choose to Light the Night is limited only by your imagination. A family dinner party, a sunset barbeque with close friends…a twilight picnic in the backyard? It’s up to you!

As darkness falls – you will be part of the official lantern lighting ceremony that will take place in thousands of homes across Australia at the same moment via video stream.

Light your lantern…

Illustration of a white lanternIn honour of your own blood cancer journey

Illustration of a yellow lantern

In memory of a loved one lost

Illustration of a blue lantern

In support of those affected by blood cancer

Be part of this very special Light the Night.  Sign up to host a Light the night for your loved ones at

Heartfelt thanks to Bridgestone Australia for their 12th year as Light the Night Principal Partner, unwaveringly supporting Australians with blood cancer for over 34 years.