Hope fizzles for girl with brain tumor
Hope brought Keilly Pike to Cincinnati.
Keilly, 16, was diagnosed with glioblastoma multiforme, the same type of brain tumor that killed Sen. Ted Kennedy, in July 2009.
It’s an aggressive, fast-growing cancer with a grim prognosis: Fewer than 10 percent of patients are still alive five years after diagnosis.
Keilly went home to Florida on Sunday, crushed by news that an experimental combination of chemotherapy drugs was ineffective against her tumor. She’ll start a standard chemotherapy regimen designed to slow the tumor’s growth while she and her family hope for a miracle – another new treatment that might work against the killer cancer.
But Keilly and other brain tumor patients need more than hope, advocates say – they need the dollars for research to find effective treatments against it and other brain cancers.
“Money is always the issue,” said Brenda Pike, Keilly’s mother. “It’s tough to say a life is the tradeoff for not having the dollars available for research for new treatments.”
Primary brain tumors – tumors that originate in the brain instead of spreading to the brain from other organs – are rare. Only about 62,000 Americans are diagnosed with them every year, and only about a third are cancer. About 4,000 children are diagnosed with a brain tumor a year in the U.S.; just over half are under 15.
The rarity is part of the reason research money is limited, experts say.
Companies are reluctant to invest millions in researching treatments for rare diseases only a few people will need when they can instead look for drugs that will earn millions in profits for disorders like heart disease, arthritis or even more common cancers, like breast and colon cancer.
“It’s not just lack of funding,” said Maryam Fouladi, director of the neuro-oncology program at Cincinnati Children’s Hospital Medical Center. “It’s lack of interest.”
In the last 25 years, only two new chemotherapy drugs for brain tumors have been put on the market. More are in the pipeline, experts say, but they’ve been a long time coming.
Researchers all face the same dilemma when they’re looking for money: Sources, such as the National Institutes of Health, pay for projects that have already shown they’ll get results.
But in order to get results, scientists need money.
“The funding drives the research. The research drives the funding,” said Deneen Hesser, director of the American Brain Tumor Association in Des Plaines, Ill.
Other factors make brain tumor research difficult.
When doctors and drug companies test new medications, they want to be able to show that the results apply to large numbers of people – often in the thousands or tens of thousands.
Because brain tumors are so rare, it’s hard to recruit those numbers, especially among children, Fouladi said.
Biology also plays a role, said Christopher McPherson, a UC neurosurgeon and one of the doctors who treated Keilly Pike.
Most brain tumors are made up of different types of cells, which makes finding effective drugs more difficult.
The body is designed to stop toxins from traveling through the bloodstream into the brain. That’s great for stopping diseases, but the blood-brain barrier also prevents many drugs from reaching tumors.
Cancer researchers now focus on identifying molecular triggers for many types of cancer – whatever chemical substance the body makes that either starts tumor growth or fails to stop it – and then finding therapies that will counteract those molecules.
They’re making good progress in a lot of different cancers, but not brain tumors.
Until researchers find that magic molecule, they’ll have to keep scrambling for funding, Hesser said.
Basic science – the lab-based science that will, eventually, identify the process that triggers brain tumor growth – is the foundation of finding effective treatments.
But it’s hard to find the money. At UC, only about $1 million of an anticipated $76 million for basic cancer research is set aside for brain tumors.
Locally, UC and Cincinnati Children’s are both expanding brain tumor research.
UC established the Brain Tumor Center in 2008 to bring more research here.
And this year, Cincinnati Children’s recruited three more researchers to beef up basic science research on brain tumors.
Keilly came to Cincinnati in July from her home in Wellington, Fla., for another try at beating the tumor.
Doctors at the UC Neuroscience Institute at University Hospital mapped the tumor and were able to remove 99 percent of the malignancy. In addition to the surgery, she also took part in a clinical trial at Cincinnati Children’s studying a combination of two already-approved cancer-killing drugs.
The treatment worked for a while, but last week, she got the news that it was no longer working against her tumor. She’d already had one surgery last year, and been through two other chemotherapy regimens, including a clinical trial at St. Jude’s Medical Center.
Keilly’s story isn’t unusual when it comes to glioblastoma multiforme, McPherson said.
Most patients undergo multiple rounds of chemotherapy and surgery, he said. “It’s a smart tumor,” he said. “It’s an aggressive tumor. It finds ways to get around the drugs.”
There aren’t many success stories with it, he said. “It’s nearly universally fatal,” he said.
That too makes it hard to find research money. Donors want to see survivors who can talk about their triumphs.
Brain tumor survivors may be too impaired by treatments to speak. Many just don’t want to be reminded of what they went through.
McPherson and others would love to see a national fund raising and awareness campaign develop around brain tumors.
“We need a ribbon,” he said, referring to the iconic pink ribbon that represents breast cancer. “Whatever color’s left.”
Hope fizzles for girl with brain tumor
Tags: lack of interest, family hope, research money, new chemotherapy drugs, primary brain tumors, brain tumors
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