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"You looked like a charred chicken," his mother Anaheeta explains. "A white charcoal chicken," his sister Kaizrin adds, “from all the moisturiser we were smothering on you.”
Navzad Engineer, 18, is making a promising recovery thanks to a new approach to fighting cancer.
"There is a tiny bit (of the tumour) left but they haven't given me the definite thumbs up. They've told me to just keep taking these drugs."
Two years ago, the Year 11 student was rushed to emergency after an MRI scan revealed multiple brain tumours. He went on to have extreme radiation and chemotherapy, which did little to stop the cancer growth.
“I had about 30 doses of radiation and my entire internal tract was all burnt. I couldn't eat ... My head and face was one massive scab."
“I was pretty much burnt out,” Navzad recalls of his treatment, which saw his body weight drop from 69kg to 45kg, in a space of about three months.
As the doctors weren't sure what type of cancer he had, they gave him a generic type of chemotherapy, which was high in dosage and had destructive side effects.
"I couldn't complete a whole session without throwing up – when you radiate the spine it makes you nauseous ... I would be throwing up every hour," Navzad says.
When Navzad's brain tumors failed to respond to traditional cancer treatments, his doctor Geoff McCowage, oncology specialist from The Children's Hospital at Westmead, advised the family to send a sample of his tumour off to a private company in the US to be genetically sequenced.
The doctors were hoping to find a key mutation in the cancer's DNA that they could treat with a targeted therapy.
As McCowage explains, they "hit a home run".
A targeted way to treat Navzad's cancer
The tests revealed Navzad's tumours had a DNA mutation common to some melanoma, so his doctors started treating his brain cancer with a melanoma drug. And so far, it seems to have worked.
"It came up a specific mutation in the BRAF gene, which is commonly found in melanoma. And low and behold, there's something called BRAF inhibitors that have been designed to treat melanoma. So even though Navzad didn't have melanoma, he had the same mutation."
"So I went to the company that manufactures the treatment and they gave me the drugs for free. And the tumours went away ... It was just amazing. We'd nearly killed him with the chemo and radiation. So it was so fantastic to see him respond to this treatment. He went to his formal, all hooked up to his tubes - what a rock star," McCowage said.
Navzad's tumour shrunk from the size of a 50 cent coin to five cent coin in a matter of weeks and he was able to return to school and finish his HSC exams.
Mapping the DNA of a cancer tumour
Professor David Thomas, the head of the Garvan's Cancer Division, told Insight the institute is one of the few organisations in the world to have purchased the latest DNA sequencing technology for research.
Thomas said a patient's DNA is extracted from a blood sample and then plastered on a slide. That slide is then put into a machine and the millions of pieces of DNA are sequenced.
"The results tell us exactly the changes that are present in the cancer cells' genome that make it a cancer. That's the holy grail here - to understand the genetic events that are required to turn a normal cell into a cancer cell."
"Using this technology we can also see that cancer types that we thought of as being quite different actually share many of the same characteristics, the same mutations. And those mutations mean that treatments we develop for one cancer type we can potentially apply to another cancer type," Thomas adds.
McCowage believes the ability to map a cancer's genome is a major step forward in the way doctors are understanding and treating cancer.
"We are now able to look at a tumor and analyse the hell out of it," McCowage says.
“This is important because we can see which genes have mutated and gone on to become cancer. So now we're in a position where we can take the tumor and analyse exactly where the molecular abnormalities are."
He said the biggest problem young cancer survivors face are the long-term effects from being treated with "old generation chemotherapy drugs".
"Some treatments can weaken the heart, damage hearing, kidneys, some (patients) will be infertile ... Brain radiotherapy can affect growth and development. It also increases your risk of getting cancer as an adult. So the more we can get on with developing clever drugs, the better."
Road to recovery
For the time being, Navzad will continue taking medication to manage the tumour and has started going to the gym.
Reflecting on his experience, Navzad said although he "used to get really depressed", he is trying to focus on being optimistic.
"The bad part I would have to say is my social life got affected and also my sporting life. I used to be really athletic and not so much anymore.
"From my experience I've learnt not to get my hopes up… because for about a year it was just bad news after bad news… It just ruined my confidence. So I learnt to take whatever comes," Navzad says.
"I learnt the fragility of life and just to live life, and not to take things for granted."
From gene sequencing technology to immunotherapy, tonight's episode of Insight looks at the newest advances in cancer treatment.
