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What you dont know could kill you

Two local women are striving to spread a sense of urgency about brain tumor research
by: Jaime Valdez, CANCER WARRIOR —Pam Keefer, has been battling glioblastoma, a form of brain cancer, for more than a year.

One week, Washington County resident Pam Keefer was tumor free. Then eight weeks later, shortly before Christmas, doctors diagnosed her with a third reoccurrence of glioblastoma.

'That's the way it is,' she said. 'It's spooky.'

Before her year-and-a-half battle with brain cancer, Keefer didn't know that glioblastoma multiforme is the most common and aggressive type of primary brain tumors. She didn't know that it occurs sporadically among people young and old.

And Keefer didn't know that with glioblastoma comes a death sentence with a five-year survival rate - a rate that has remained relatively unchanged in the last 30 years. She just didn't know.

Yoka Wilcott has spent the last year and a half helping her son battle a brain tumor. The doctor's news of a reoccurrence of the tumor in June 2007 was devastating.

At a National Brain Tumor Foundation fund-raiser this fall, Wilcott noticed a push by organizers to get out informational packets about brain tumors. It was then that she realized that 'people just don't know that much about brain tumors.'

Today Keefer can recite numbers, statistics and complicated medical alternatives, and delve into the topic of research for brain tumors with the confidence she once used to ride show horses and operate her own stable. According to the American Brain Tumor Association, about 190,000 people are diagnosed with brain tumors, both cancerous and benign, each year.

'It's a wild ride,' Keefer said of her terminal diagnosis, 'and I hope some day somebody can be spared from it.'

And rather than just letting that be a statement merely echoed in prayers, Keefer has become active in fund-raising for the American Brain Tumor Association. This fall Keefer held a garage sale and raised $20,000 for ABTA - a non-profit organization that funds grants for brain tumor research.

And as a patient enrolled in the University of California in San Francisco's Oncophage trials, Keefer is adamant about the need for more funding for brain tumor research and education.

Oncophage is an investigational patient-specific vaccine produced by Antigenics and designed to treat cancer with the intent of minimizing side effects. The vaccine is made from individual patients' tumors. Keefer underwent six vaccines before her tumor reoccurred. But doctors are still hopeful, she said.

ABTA and the National Cancer Institute are supporting the Oncophage trials with grants.

While Keefer said the new drug holds a lot of promise for brain tumor patients, it won't be a cure.

'But the quality of life, it's like not having treatment, and it extends life. Anything to hold (death) back,' Keefer said.

Wilcott is also fund-raising to help cover the costs of her son's own treatment - Blood-Brain Barrier Disruption at Oregon Health and Science University Hospital which costs about $20,000 per treatment.

And while family and friends have rallied around the Wilcott family, Yoka Wilcott has realized the importance of simply educating people about brain tumors.

'You know you kind of adjust your life to what's going on. You have to do what you have to do when it comes to family,' Wilcott said.

For more information about research or treatments for brain tumors, visit NBTF at braintumor.org or ABTA at abta.org.