Larry Trotter, 8, has a rare brain tumor. His parents hope that a drug that will be prosecuted in the US will give him more time.
A couple of Oaklanders who had a rare, unbearable brain tumor hope that a drug that sends him abroad will give them more time with their guy.
Arian Trotter, 8, has been fighting aggressive cancer in his brain stem, known as DIPG, since November 2015.
It is one of the most deadly childhood cancers. On average, children with DIPG survive about a year.
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When Arian was diagnosed doctors told his parents Sanaz and Nadim Trotter had nine months to live.
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The disease was difficult to treat. In New Zealand, radio therapy was generally recommended.
DIPG does not respond to standard chemotherapy and surgery was not an option because part of the brain stem affected critical body functions controlled, including breathing, ingestion, and sleep.
Arian underwent dozens of rounds of radiation and in July 2016, a scan showed that the tumor had stopped growing.
But a routine MRI scan in June revealed that the cancer had spread to another part of Arian's brain – the frontal lobe, which is responsible for motor skills, language, memory, and problem solving.
"We have a great fear that we thought maybe, you know, is a miracle," Sanaz Trotter said.
"He passed the date they gave us that he would live in it [we thought] "Maybe he'll live longer."
"So we saw the tumor metastasis and it really brought us back to reality that he could go every day."
Because of the location of the new tumor Arian's neurosurgeon was able to take a biopsy.
His parents sent part of the tumor to the United States for a DNA sequence to find out whether new drugs targeting certain genetic mutations in cancer cells might work on the tumor.
A study at the University of Glasgow, published last year, showed that Olaparib, previously used to treat advanced ovarian cancer, may be used against aggressive brain cancer.
An experiment was conducted in the United States to find out if Olaparib is effective in treating DIPG.
Tests have shown that Arian's tumor has a genetic mutation that may respond to Ulpriv, so his parents decided to try it, hoping it would prolong his life.
Olaparib is not funded in New Zealand so that Tuters, living on the northern coast of Auckland, pay $ 7,500 a month for the drug, which Arian has been taking every day for the past two weeks.
The 8-year-old insolent girl, who loved computer games and played prank, has yet to experience negative side effects.
In the next month, Arian had another MRI scan to see how effective the treatment was.
The laser's director of physics, Lisa Williams, said she had not received a request to use Olaparib to use brain tumors, but she did not appreciate evidence of its efficacy in treating DIPG.
Dr. Michael Sullivan, a pediatric cancer specialist at the Royal Children's Hospital in Melbourne, said that various targeted therapies for DIPG, including Olaparib, were tested in a dozen international clinical trials.
"It's fair to say we do not yet have the results of these experiments [Olaparib] There is no evidence to show that he is going to cure any particular child.
"Families are usually very realistic and know that something can be given extra time or relieve symptoms."
Although a drug had not yet been found, oncologists were hopeful that they could eventually be developed, Sullivan said.
"This is a cancer where we can only cure children in the future by inviting families now to participate in clinical trials."
He estimated that about 10 children in Australia and New Zealand were diagnosed with DIPG each year.