TOTAL XVII – TOTAL Therapy Study
Paediatric acute lymphoblastic leukaemia (ALL) is the most common childhood cancer. Yet, despite the latest in clinical advances, it still remains the leading cause of cancer related death in young people.
Paediatric acute lymphoblastic leukaemia (ALL) is the most common childhood cancer. Yet, despite the latest in clinical advances, it still remains the leading cause of cancer related death in young people.
Thanks to the Good Friday Appeal Run for the Kids, newly diagnosed patients with ALL and lymphoblastic lymphoma at The Royal Children’s Hospital (RCH) have been able to access the latest in personalised medicine.
The trial, known as the TOTAL Therapy Study XVII or TOTAL 17, is an international collaboration led by St Jude Children’s Research Hospital in America.
Over the past two years, 61 patients at the RCH have been enrolled in the innovative program, far exceeding the initial aim of enrolling 20 patients per year. Recruitment for the trial ceased in mid-2023, with patients enrolled continuing with follow up including neurocognitive assessments.
Once enrolled, the child’s blood and bone marrow samples were sent to St Jude. There, clinicians used state-of-the-art tools and gene mapping to identify the specific cancer-causing gene combinations, providing patients with the opportunity to receive treatment that is specifically designed to fight their type of cancer.
As well, the study offers an opportunity to identify the likelihood of cancer impacting patients and their families again in the future, while also providing information about the suitability of different drugs, to minimise side effects.
Currently, the RCH is the only hospital in Australia participating in the TOTAL Therapy Study XVII, providing access to the best outcomes globally.
This would not be possible without support of the Good Friday Appeal and Run for the Kids, something Dr Di Hanna, a Paediatric Oncologist at the RCH Children’s Cancer Centre, is grateful for.
“The Good Friday Appeal fundraising is critical for every piece of the cancer journey. We need the latest research, diagnostic tools, best clinical trials, and patient and family support networks, and the Good Friday Appeal has been a cornerstone for each part of that.
“Importantly, thanks to the Good Friday Appeal, we are also able to provide children with leukaemia and lymphoma access to one of the best clinical trials in the world,” said Dr Hanna.
One of the patients enrolled in the trial is five year old Bobby, who was diagnosed with B-cell ALL when he was three.
For patients like Bobby, the long term impacts of the TOTAL Therapy Study XVII are life changing.
“One of the best things the trial has offered us is the additional supports, including the neurocognitive and physio assessments. It has been invaluable for us when considering things like getting Bobby ready for school, including any adjustments we need to make,” said Trudy, Bobby’s mum.
“Additionally, the idea that we could be part of that larger pool of research is significant to us. Being able to contribute to future developments to benefit other families made our decision an easy one,” she added.
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