Expanding fight against brain cancer

Clinical trials: Scientific advances, experimetal therapies and the chance to survive spurs a Mount Airy woman to volunteer as a guinea pig.

October 19, 1999|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

Deep into the night, even in her sleep, Melanie Perone was haunted, fearing that the most aggressive and deadly of brain tumors might be growing back. Day after day, she would run down the stairs to her basement, to the computer, to search for a way to save her life.

A few years ago, when brain tumors were the poor cousin of cancer research, the Mount Airy woman's prospects would essentially have been no different than the dismal options of the 1960s.

But an explosion of findings in molecular biology has transformed the study and treatment of brain cancer.

Suddenly, this stubborn, lethal cancer that few wanted to study because it is so rare, so complicated and so hard to reach, is now attracting top researchers.

The number of clinical trials has multiplied. And patients like Perone can choose from scores of experimental therapies.

"I thought if I found the perfect trial, it would save my life," she said.

The first hint of her brain tumor came in late March, while she was waiting in line at the library. She felt a tingling on the lower right side of her mouth.

"It was enough for me to go, `Huh, what was that?' " she said.

Within a few weeks, she got her answer: a mass on her brain. But Perone, 36, an optimist with a big smile, wasn't worried. She felt confident her age would protect her, even after the operation on Good Friday when surgeons removed her walnut-sized tumor.

But then doctors told her the biopsy results. A nurse closed the door. Perone's husband, Jim, stood at her side. Two physicians looked at her from the foot of the bed. One of them used the word "malignant."

Perone screamed, not in fear, she said, but in grief. It was the wail of a woman who had just lost her baby. Doctors gave her six months to two years to live.

Unlike so many before her, though, she received the diagnosis at a pivotal period. For the first time in a generation, doctors can offer novel therapies, therapies that give Perone a chance to survive.

"We're kind of lucky now," said Perone, who finds herself reeling between despair and hope. "There's more magic bullets to look at. Maybe they'll find a cure tomorrow."

The turnaround in this largely neglected field started in 1994, when frustrated federal health officials decided to rethink their approach to brain tumors.

For years, researchers were mostly testing variations on radiation and chemotherapy by enrolling hundreds of patients in costly trials that often took years to complete. They also produced little new knowledge -- and saved few people.

So the National Cancer Institute decided to try lots of different strategies in much smaller studies, to get quicker results and find promising therapies.

Now, researchers can learn in a year to 18 months whether a treatment is safe and might work. Research dollars dedicated to brain tumors multiplied, growing from $12.6 million in 1982 to an estimated $59.6 million in 2000, according to NCI figures.

At the same time, discoveries in molecular biology -- such as deciphering some of the key genetic changes in brain tumors -- gave physicians fresh targets to pursue.

Tumors rare but varied

Brain tumors make up only 1 percent of all cancers, but there are more than 100 types of them. They behave unlike any other cancers. They don't spread to other parts of the body, and they have a gnarled network of leaky blood vessels.

Scientists discovered that those distinctive features make them perfect models for two of the most promising cancer treatments today -- gene therapy and a strategy that starves tumors by shrinking their blood supply.

Suddenly, dozens of scientists with no previous interest in brain tumors have been drawn into the field.

"We used to have these tiny little meetings in which we were kind of voices in the wilderness," said Dr. Richard S. Kaplan, program director for brain tumor research at the National Cancer Institute. "Now there's just a tremendous outburst of interest."

By April, when Perone got her diagnosis, more than 150 clinical trials were under way.

She immediately went to Montgomery Ward, bought equipment that gave her access to the Internet from her TV, and printed out a bewildering ream of data. A house cleaner who earned her GED and took some community college courses, she didn't know how to type and had never used a computer.

But soon, she was sorting information on dozens of studies in stacks in her basement. Hours passed without her realizing it. So did the days.

Obsessed with data

"I was obsessed," said Perone, who often worked until midnight and finally had to install a clock to make sure she went to bed. "I mean, how many rats died, how many lived?"

Perone knew from her research that a minority of the approximately 34,000 Americans in whom primary brain tumors are diagnosed every year -- meaning the tumors arise in the brain rather than spread from somewhere else -- can be successfully treated.

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