Desperate call for cancer treatment funding as families speak of heartbreaking diagnosis
https://7news.com.au/news/desperate-call-for-cancer-treatment-funding-as-families-speak-of-heartbreaking-diagnosis-c-12905419
Families and medical experts are calling on the Federal Government to commit more funding to find treatments for a rare and aggressive childhood cancer that kills about 20 Australian kids every year.
Diffuse intrinsic pontine glioma (DIPG) is a tumour that develops in a part of the brain that controls important body functions such as heartbeat, breathing, sleeping, balance and bladder control.
Some of the symptoms include difficulties with balance and swallowing, headaches and odd eye movements.
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Scully was given six weeks of radiotherapy and then put on a clinical trial known as PNOC-022 for children with DIPG.
Typically, children with DIPG live about 11 months after their diagnosis, but Scully’s tumour has shrunk 75 per cent while on the clinical trial.
Harrison said, while the medication will prolong his life, at any given moment the cancer cells could stop responding to the drugs and Scully’s health will quickly decline.
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Dun is part of the PNOC-022 clinical trial which began in 2021 and is now open in 31 hospitals around the world — including all eight Australian and New Zealand major paediatric oncology hospitals.The trial is testing the effectiveness of drugs ONC201 and Paxalisib.
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So far, seven children from around the world who are on the trial have survived longer than two years, and one child in Sydney has survived five years, Dun said.
He said from the trial’s preliminary data, there has been a nine to eight month survival extension for patients who have also completed radiotherapy.
The team working on the PNOC-022 trial hope by mid-2024 they will be able to report on the trial’s results and the drug’s side effects, which Dun said could include nausea, rashes and mouth ulcers.
If the results demonstrate success, they will apply to the United States Food and Drug Administration to approve the drug, and then the Therapeutic Goods Administration in Australia.
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While the PNOC-022 treatment is not believed to be a cure, Dun said the clinical trials could help eventually find one.
