At 30, Amanda Johnson learned that she had about 16 months to live after her on-again-off-again headaches lead to a glioblastoma diagnosis. In fact, the tumor in her brain was so large that it was threatening even the short time frame that she was given.
Amanda Johnson, pictured with dad Larry, started getting headaches, which was out of the norm for her. (Courtesy of Johnson Family.)
“I asked the doctor what would have been the prognosis if he hadn’t done the surgery and he said the tumor was so large that he presumed she would not have survived the weekend if we hadn’t gotten her into the hospital where they could do the surgery,” Larry Johnson, Amanda’s father, told Fox News.
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Larry said he and his wife soon learned the grim prognosis that comes with a glioblastoma diagnosis, and once they heard the word “hopeless” being tossed around, they threw themselves into learning everything they could about the cancer and what they could do to help their daughter.
Johnson underwent immediate surgery to remove as much of the tumor as doctors could, and then her parents started searching for treatments that would offer more than her estimated prognosis. (Courtesy of Johnson Family)
Glioblastomas are invasive, aggressive brain tumors that typically cause a rapid progression of symptoms in patients and account for 15 percent of all primary brain tumors. Increased pressure in the brain may cause patients to experience nausea, vomiting and headaches as well as weakness or sensory issues, balance difficulties or memory issues. Patients may also experience seizures, according to the American Brain Tumor Association.
In their search for help, the Johnsons connected with UCI Health neuro-oncologist Dr. Daniela Bota, who is currently leading a clinical trial for 700 newly diagnosed glioblastoma patients.
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Bota enrolled Johnson in one of the very last available spots in the trial, which is for patients over 18 who haven’t already tried another therapy, and uses a traditional combination of chemotherapy and radiation, as well as an experimental drug therapy called Marizomib. For nearly two years, Johnson has received the infusions three times a month, and at this point, her tumor is so small that it is no longer measurable.
“I’m getting back into writing again,” Johnson, now 32, told Fox News. “I’ve been working really hard – it’s been hard to get into this third [novel] but I’m getting ideas again – I feel more alive.”
Bota said the experimental drug crosses into the brain barrier, which is something traditional cancer treatments have been previously unable to do.
Dr. Bota, pictured with Johnson, said the experimental therapy crosses the brain barrier, which other cancer drugs have been unable to do. (UCI Health)
“A lot of drugs we use for cancers like breast or lung are not effective on brain cancer because they cannot cross the brain barrier,” Bota said. “Marizomib can target the cells in the tumor that are responsible for the tumor growth – the stem cells – they are resistant to classic chemotherapy and radiation but it’s exceptionally sensitive to Marizomib.”
Bota said the trial is designed for patients to enroll for a year, and then decide for how long they would like to continue on with the infusions. Stopping treatment runs the risk of recurrence, which is something Johnson and her parents are acutely aware of.
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“Amanda is a smart girl, but I don’t think she’s come to realize how important her survival is to other people and families who are going to find themselves in a similar situation,” Larry Johnson said. “The breakthroughs that seem to be taking place in regards to glioblastoma is so remarkable. We’re happy to have her and we’re happy to help anybody who would find themselves in a similar predicament. Words cannot describe how happy we are.”