Arian Truter, 8, is a rare brain tumor. His parents hope the US drug will give him more time.
Auckland couple, whose son is a rare brain tumor, I hope that the grass that is being tried abroad will give them more time with their boy.
Arian Truter, aged 8, has been struggling with aggressive cancer in his brain stent, known as diffuse intrathoracic hypotension (DIPG) since November 2008.
This is one of the most deadly childhood cancer cases. Children with DIPG live on average for about a year.
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When Arians was diagnosed, doctors told their parents Sanazu and Nadim Trutter, he had nine months to live.
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TheTheThe disease was difficult to treat. Radiotherapy was usually recommended in New Zealand.
DIPG does not respond to standard chemotherapy and surgery is not an option since the brain stem has been influenced by controlled critical functions of the body, including breathing, swallowing and sleeping.
Arians has gone through many stages of radiation, and in July 2016 a scan showed that the tumor stopped growing.
But a routine MRI scan in June revealed that cancer has spread to another part of the Arian brain – the front lobe that is responsible for movement, language, memory, and problem solving.
"We were very sad because we thought you might know he's a miracle," Sanaz Truter said.
"He accepted the date on which they gave us that he will live up to [we thought] "maybe he will live longer".
"Then we saw a metastatic tumor, and it really got us back in the reality that he could go any day."
Given the new tumor's condition, the Ariana neurologist was able to conduct a biopsy.
His parents sent a United States tumor to DNA sequencing to see if new drugs targeting certain gene mutations in cancer cells could affect the tumor.
A study published last year at the University of Glasgow's Oplarib treatment, which was used abroad to treat progressive ovarian cancer, could potentially be used against aggressive brain cancer.
A study is being conducted in the United States to determine if Olaparib is effective in treating DIPG.
Tests showed that the Arian tumor had a genetic mutation that could respond to Olaparib, so his parents decided that he should try it, hoping that it would prolong his life.
In New Zealand, Olaparib is not funded, so Trutter, who lives in the North Auckland, pays $ 7,500 a month for a drug that Arians uses every day in the last two weeks.
A wonderful 8 year old, who loved computer games and gambling anger, had even experienced negative side effects.
Next month, Arian would have another MRI scan to find out how effective the treatment is.
Pharmac's operations director Lisa Williams said that he had yet to receive a funding application for Olaparib for use in brain tumors but did not evaluate evidence of its effectiveness in treating DIPG.
Dr. Michael Sullivan, MD of the Royal Children's Hospital in Melbourne, said that various targeted DIPG therapies, including Olaparib, are being tested in about ten international clinical trials.
"It's fair to say that we do not have the result of these trials. About this particular drug [Olaparib] There is no evidence that it will cure a particular child.
"Families are generally very realistic and know that an attempt at something could be to give extra time or relieve symptoms."
Although the cure was not yet found, oncologists hoped that it could be improved, said Sullivan.
"This is a cancer in which we can cure children in the future, urging families to now participate in clinical trials."
He estimates that around 10 children in Australia and New Zealand are diagnosed annually with DIPG.