News

Each year, on World Cancer Research Day September 24th, we recognise the vital role clinical trials play in transforming lives. World Cancer Research Day raises awareness of the importance of research in improving cancer prevention and early detection and in revolutionising treatments and survival outcomes for people with blood cancer.

For those affected by the aggressive cancer Acute Myeloid Leukaemia (AML), research is providing much more than data and discovery – it’s providing hope. ALLG researchers are at the forefront of AML clinical trials globally, leading efforts to improve survival outcomes and provide better treatment options for AML patients through our clinical trials. Leading the way is our cutting-edge platform clinical trial, AMLM26 INTERCEPT and on this day Belinda shares her mum’s Ania’s experience of participating in the ALLG AMLM26 INTERCEPT Trial.

When Everything Changed – Mum’s AML Diagnosis

My sister Kathryn and I were with my Mum Ania when she was diagnosed with acute myeloid leukaemia (AML). It was a shock diagnosis, completely unexpected and found from a routine port flush blood test as she was preparing to travel overseas. She was initially told she had approximately 4 weeks to live, which we just couldn’t believe, as she was asymptomatic, looked and felt well!

Ania, pictured with her daughters

As daughters, we found it challenging to watch our Mum facing a terminal prognosis with only us as her advocates. We had time against us and felt we were already on ‘borrowed time’. So, we wanted hope. Hope that someone may be on the cusp of a miracle cure. Or simply hope that there one more option after the next relapse. As Mum would say, “a dying cancer patient wants to live with hope that there is potentially something around the corner and not be told there is nothing else.”

We were with her during the initial treatment phase every day while in hospital for 4 weeks and we were thrilled to achieve ‘remission’, knowing that we had bought ourselves more time with our Mum. However, we knew we were on borrowed time as this cancer is incurable, and incredibly aggressive. Initially, Mum went through a private haematologist on the Gold Coast – thinking that this is going to give us the best possible chance of treatment success with a more individualised treatment plan but what we didn’t know is that it limits access to a lot of clinical trials that are available in the tertiary public hospitals.

Through a colleague of mine I contacted Professor Andrew Wei, Chief Investigator of the ALLG AMLM26 INTERCEPT trial and a passionate researcher. He directed me to Dr Sun Loo, another incredible haematologist and human being.

Unfortunately, my mum’s journey with AML ended in February 2025. She went through five lines of leukaemia treatment, three of them clinical trials. I truly believe that each trial prolonged her life, even just a few weeks at a time – which meant we got another 17 months with our Mum, when initially we braced ourselves for four weeks.

Mum’s Time on the AMLM26 INTERCEPT Trial

After speaking to Dr Sun Loo, we quickly got Mum onto the screening pathway of the INTERCEPT trial, through the Gold Coast University Hospital. Even though our Mum was still undergoing treatment through her private haematologist, she was consented to the trial, knowing that once she relapsed, we had an alternative treatment option through an ALLG trial.

Belinda & Dr Sun Loo

Unfortunately, Mum relapsed less than a month after being consented to the screening pathway. The day we found out, I emailed Dr Sun and arrangements were made for us to start Part B of the INTERCEPT trial at the Gold Coast University Hospital (GCUH). Mum responded to the trial drugs incredibly quickly, and we managed to get about 4 months of quality life.  When she relapsed again, we thought that was it, but Dr Sun and the team at GCUH quickly found another trial for Mum to try.

The INTERCEPT trial was Mum’s favourite…if one can say that!  In 2024, the treatment drug still had a code name SNDX-5613 and it was literally a capsule taken twice daily. There was an enormous amount of testing done during the first cycle to check for side effects on Mum, but also to research the pharmacokinetics and efficacies for new treatment.

Mum had minimal side effects – she kept her hair, her skin was great, and her energy levels still good. She felt physically better on the trial than with the initial chemo treatment. Being mindful that she was still immunocompromised, this trial allowed her to be at home the majority of the time. Meeting her haematologist and clinical trial nurse twice a week became one of her favourite things to do! We became close to the trial treating team and were able to call any time with any concerns. Mum always said she felt like it was a very personalised treatment approach and as we were there every step of the way, we can 100% agree with her sentiment.

Unfortunately, my mum’s journey with AML ended in February 2025. She went through five lines of leukaemia treatment, three of them clinical trials. I truly believe that each trial prolonged her life, even just a few weeks at a time – which meant we got another 17 months with our Mum, when initially we braced ourselves for four weeks.

“The future of cancer medicine cannot progress without clinical trials. The reason we have the ‘gold standard’ treatment approach to certain cancers is because of trial data. What the ALLG are setting out to achieve is incredible, and the passion of each researcher is evident. I have seen it firsthand when a patient hears of a clinical trial for the first time and it is often when they are at their most vulnerable – when they have relapsed and are offered no other standard treatment options. My Mum repeatedly said to her team, no patient wants to hear there are no other options, they want to hear hope and that there is potentially something out there.”

Turning Research into Future Impact

Mum’s haematology team were always amazed at her strength, resilience and sheer determination to do whatever she can to make it work – her mantra with the clinical trials team was to “use her and take whatever they could, she had nothing to lose!” which used to make people laugh, especially when it came to bone marrow biopsies!

Research is incredibly important – after all, how do drugs become widely available to patients for any disease or condition?  It’s all through research and clinical trials!  Without the clinical trial components, researchers and drug manufacturers cannot determine the safety and efficacy of a new treatment that could potentially cure cancer!

Even before Mum’s cancer diagnosis, she believed that cancer research was on the cusp of cures for many types of cancers.  Throughout her cancer journey, she would say that a cure for AML is only five years away… and in her 17 months of treatment, we have already seen the new AMLM26 treatment become available for more trial participants, and that the gathering of research data will enable SNDX-5613 (Revumenib) to become approved for other AML patients.

There are incredible results coming out of early phase trials all over the world, and the ALLG should be so incredibly proud of the research they are doing, targeting Leukaemias, Lymphomas and Myelomas.

What the ALLG did for my Mum was give her the hope she was looking for, knowing that her body will have contributed to science and the future of AML research – and this can only be of benefit to other people in future.