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Access to a clinical trial means having the strength to play with his dog Aussie
Diagnosis: Hyper Mutant High Grade 4 Glioblastoma
Age at Diagnosis: 14
Clinical Trial: Nivolumab
Owen Munday was a typical teenager who loved hanging out with his girlfriend and friends, gaming, visiting the local recreation centre, and surfing the internet. He had been experiencing unusual consistent headaches and nausea. The family doctor started treating Owen for meningitis but his family knew something else was going on. Owen's dad insisted on an MRI, which showed a mass in the middle of his brain. Owen was diagnosed with a high-grade glioblastoma brain cancer just before Christmas in 2018 and two months before his 15
Glioblastomas are fast-growing tumours with threadlike tendrils that can extend into many parts of the brain and spinal cord. Treatment of glioblastoma typically depends on the location of the tumor and how far it has progressed. Surgery and radiation therapy, with chemotherapy during or following radiation, are the standard treatments. They are difficult to treat, and often return, even with the most intensive treatment.
At first, Owen’s treatment followed standard protocol, which is surgery to remove the tumour followed by six weeks of chemotherapy and radiation. He found the chemotherapy he was on to be easy to take, as it was in pill form. The main side effects he experienced was some hair loss and nausea. He found radiation to be the most difficult part of his standard frontline treatment, as it zapped his energy and made him feel very tired. He would get home to the Ronald MacDonald House and go right to bed. Owen completed his radiation treatment and the family was able to return to their home in Barrie. He continued his chemotherapy and was able to return to school.
However, after a few weeks Owen's headaches returned and the satellite Hospital sent him back to SickKids Hospital in Toronto. After an emergency MRI it became apparent that standard treatment wasn’t working for Owen. The cancer had returned and had spread with five new tumours the size of a pea through his brain and his spine. After consulting with Owen and his family in May 2019 and receiving his consent, his doctors decided to enroll him on an experimental clinical trial that examined the effectiveness of a drug called nivolumab. Cancer cells are very good at blocking the immune system from doing its job and killing these foreign cells in the body. Nivolumab is a checkpoint inhibitor (PD-1) that blocks cancer cells from evading the immune system, allowing it to do its job.
Owen was told it may take a few weeks for his enrollment to be reviewed and approved, and a week or two before he would receive the treatment, but his doctors were able to speed up the process and by the next day they had approval and he was on the clinical trial.
Owen received his first treatment one day after the approval thanks to his doctors’ advocacy. Initially, he reacted poorly to nivolumab. He vomited a lot in the first few weeks and ended up spending a few days in the ICU. Eventually his body adjusted to the treatment, and supportive anti-nausea medications like granisetron helped him feel like himself again.
Nivolumab is given less frequently than the chemotherapy he was on (every two weeks vs. once a week) however Owen found the nivolumab more difficult to take as he received it through an IV (standard for many chemotherapies). As treatment progressed throughout the months, Owen generally felt better after treatment. Now adjusted to nivolumab, the recovery was much easier. He would head home after treatment happy and ready to play with his new Australian Shepherd puppy dog, Aussie.
Owen is still on active treatment with nivolumab but is NED (no evidence of disease). After only two months, Owen's tumours shrank significantly. He was able to achieve NED after only four months of treatments of nivolumab. This has amazed his doctors who share his story with everyone when discussing nivolumab.
Treatment for someone on nivolumab would typically take place over two years, but because of how difficult high-grade glioblastoma is to treat, Owen’s team intends to wean him off the nivolumab slowly, lengthening his treatment to about two and half to three years. However, this is still to be determined.
Overall, Owen is happy to be healthy again. He loves the doctor running the trial, Dr. Bouffet. Owen said Dr. Bouffet is wonderful and speaks to him like an adult, explaining everything patiently and in detail. He also loves working with his social worker David Brownstone at SickKids and it has inspired Owen to become a social worker when he gets older to help others, like everyone at SickKids has helped him become a survivor.
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