man playing guitar with granddaughter

Surviving a deadly brain tumor

September 26, 2019 | UCI Health
dr daniela bota and amanda johnson
UCI Health neuro-oncologist Dr. Daniela Bota with her patient, Amanda Johnson.

In August 2017, Amanda Johnson began to experience debilitating headaches. Within a week, the Mission Viejo freelance writer also developed severe cognitive problems that landed her in an emergency room, where doctors discovered a large tumor straddling both sides of her brain.

Doctors quickly diagnosed her with glioblastoma, an aggressive, incurable cancer that can occur in the brain or spinal cord. The same disease claimed the lives of U.S. Sens. Edward M. Kennedy and John McCain, as well as former Vice President Joseph R. Biden’s son Beau.

A local neurosurgeon performed emergency surgery, but he removed only part of the tumor straddling Johnson’s frontal lobes rather than risk causing permanent neurological damage.

She was referred to UCI Health neuro-oncologist Dr. Daniela Bota, who enrolled the young woman in a clinical trial that showed promise in shrinking brain tumors.

Promising therapy for the deadliest tumor

In the clinical trial, newly diagnosed glioblastoma patients are treated with chemotherapy, radiation and an experimental drug called marizomib, which can penetrate the blood-brain barrier and inhibit cancer growth without causing damage to other parts of the brain.

Traditional chemotherapy drugs lack the ability to do this.

According to the American Brain Tumor association, glioblastomas represent about 15% of all primary brain tumors and is the deadliest. The median age at diagnosis for glioblastoma is 64, and risk increases with age.

Marizomib trial extending survival

For most glioblastoma patients, tumors begin growing again within nine months after surgery. The average survival period is about 12 to 18 months.

However, many marizomib trial patients are surviving more than 24 months without tumor, says Bota, co-director of the UCI Health Comprehensive Brain Tumor Program.

Johnson, who has been receiving the treatment for two years, has seen her tumor shrink so much that it is no longer measurable. Another of Bota’s patients has survived without measurable tumors for nearly three years.

‘Alive’ and ‘doing well’

“Not only are they alive, they are doing well,” says Bota, who also is UCI School of Medicine’s senior associate dean for clinical research and chief scientific officer for its Center for Clinical Research.

This fall, Bota is launching Phase 3 of the trial at the UCI Chao Family Comprehensive Cancer Center, Orange County’s only National Cancer Institute-designated comprehensive cancer center. Phase 3 trials compare a new treatment that has proven safe and effective with standard therapies.

“We are the first in the nation to open the third phase of this promising glioblastoma clinical trial, which has been effective in shrinking the aggressive brain tumors among our study participants,” she says.

More important, “This therapy is improving their quality of life.”

Hopeful to soon be cancer-free

Johnson, 32, is back at work on her novel and drawing again. She continues to receive infusions three times a month and she is hopeful that she’ll soon be cancer-free and find a publisher for her novel.

“I just got a membership at my local gym,” Johnson says with delight. “I feel so happy just to be alive.”

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