patient - Amanda Johnson and Dr. Bota

Surviving a deadly brain tumor

Newly diagnosed with glioblastoma, Amanda Johnson had few treatment options in September 2017 when she sought out UCI Health brain tumor specialist Dr. Daniela Bota. Now, more than 4 years after participating in an experimental drug study, she has had no sign of recurrence.

“A clinical trial was my only option,” said Johnson, 35. “I don’t think I’d even be alive now if I hadn’t been on one.”

Johnson’s journey began in August 2017, when she began to have 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 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.

Promising therapy for the deadliest tumor

Other neuro-oncologists could only offer Johnson one of the few drugs approved for glioblastoma. But Bota was leading a phase 2 clinical trial of marizomib, a compound derived from deep sea microbes that showed promise in shrinking glioblastomas. Johnson enrolled almost immediately, just before the trial was closed to recruitment.

“For a lot of cancers, there aren’t many options,” the Mission Viejo freelance writer said. “A clinical trial is your best hope.”

In the clinical trial, newly diagnosed glioblastoma patients were treated with chemotherapy, radiation and 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 are the deadliest. The median age at diagnosis for glioblastoma is 64, and risk increases with age.

Hope for 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 were surviving far longer without tumor recurrence, says Bota, co-director of the UCI Health Comprehensive Brain Tumor Program.

Results of a phase 3 study showed that adding marizomib to standard treatment didn’t improve survival in newly diagnosed glioblastoma cases. But that hasn’t been Johnson’s experience. After receiving treatment for a little more than two years, her tumor shrink so much that it was no longer measurable. An MRI scan in March 2022 still shows no sign of recurrence.

Bota says another of her patients also has survived without measurable tumors more than four years after diagnosis.

‘Alive’ and ‘doing well’

“Not only are they alive, they are doing well,” says Bota, who also is UCI School of Medicine’s vice dean for clinical research and medical director of its Center for Clinical Research.

“This therapy is improving their quality of life.”

Johnson is back at work on her novel and drawing again. She is hopeful that she’ll soon find a publisher for her novel.

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

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