"When I was diagnosed with this tumor, the average life span was 12 to 15 months. I've lived 13 and half years."
Lorin Jensen remembers the exact day his cancer battle began — July 1, 2007. He was country dancing and his arm kept going numb.
“At first, I thought it was just a pinched nerve,” says Jensen, a seasoned physical therapist. “But I decided to get it checked out that night at my local emergency department, just in case.”
The ED physicians initially performed a CT scan to check for a stroke. What they found was a brain tumor. After an MRI, Jensen’s doctor referred him to a community neuro-oncologist who recommended an operation to excise the tumor. Because the tumor was situated on his speech center in the left temporal lobe, it would need to be an awake craniotomy.
Jensen, then 45, wanted a second opinion. The doctor he saw confirmed the need for a surgery to be done while he was awake to protect his speech center, and referred him to UCI Health neurosurgeons. They removed about a third of Jensen’s tumor, which was round and the diameter of a quarter. Pathology tests of the biopsied sample confirmed it was a gemistocytic astrocytoma — a type of glioma and among the deadliest of all brain tumors.
Aggressive, malignant gliomas affect about 200,000 people a year and have taken the lives of U.S. Sens. John McCain and Edward M. Kennedy, President-elect Joe Biden’s son, Beau, famed defense lawyer Johnnie Cochran and rock drummer Neil Pert, to name a few. The average life expectancy after diagnosis is 15 to 18 months.
Jensen has beaten that timeline and then some, surviving more than 13 years — thanks, he says, to the relentless efforts of pioneering UCI Health neuro-oncologist Daniela A. Bota, MD, PhD, who consistently adjusted his therapy as new options became available.
Initial treatment
After the UCI neurosurgeons removed as much of the tumor as possible, they sent him back to his in-network doctors, who prescribed intensity-modulated radiation therapy (IMRT), which concentrates higher, more effective doses of radiation directly to the cancer cells while limiting damage to healthy tissue around the tumor.
Jensen was also given Temodar, the standard of care chemotherapy treatment used to fight brain tumors at the time.
By his next MRI, however, his tumor had tripled to the size of a ping-pong ball.
He was referred back to UCI Health for another consult, this time with Bota. Meeting her would change his life. “It was either her very first day of practice or her first week so I was her first patient,” recalls Jensen.
Bota determined that the tumor had progressed to a higher grade astrocytoma. She recommended a different course of treatment, but the oncologist covered by his insurance said it wasn’t allowed because it was experimental.
Fortunately, Jensen insisted that the doctor put it writing. “That gave me proof that they were unable to treat this tumor and a path to get the out-of-network treatment I needed at UCI Health,” says Jensen, “If I’d gone back in their system, I’d have been dead by now. I’m certain of that.”
After many battles with his insurance company, Jensen was finally approved for bi-weekly treatments at UCI Health under Bota's care. He credits a compassionate and tenacious UCI Health nurse practitioner, who argued for countless hours on his behalf, and close friends for getting him the needed approval.
“When I was on Irinotecan (a type of chemo) it made me so nauseated I could only tolerate 10 minutes on the phone. My friends would stay on hold for two hours at a time until we reached the right person then put me on to talk. It was exhausting,” he recalls.
Stop at nothing care
“A brain cancer diagnosis comes so unexpectedly, like thunder in a clear sky,” Bota says. “Most times, patients end up having a seizure and come to the emergency room. Other times, they aren’t speaking as clearly, or have more headaches or difficulty walking.”
Bota is the medical director of the UCI Health Comprehensive Brain Tumor Program and vice dean of Clinical Research for the UCI School of Medicine. In these roles, she leads a highly skilled team of experts who provide access to leading-edge research and clinical trials, and develop individualized treatments and therapies for cancer patients.
“With Lorin’s type of tumor, you count survival in very short years, not in decades,” says Bota, who devised an aggressive treatment plan for him.
At the UCI Health Comprehensive Brain Tumor Program, the plan for each patient has multiple dimensions:
- Listening and learning about the patient, the patient’s family and environment
- Studying the tumor at the highest level to obtain the genetic information to help personalize treatments
- Determining if the patient’s own tumor can be used to develop a new immunotherapy or vaccine specifically target for the patient’s disease
“We look at each patient individually, trying to make sure everybody gets the maximum amount of attention and that their needs are addressed,” Bota says. “But we also look them as a collective and try to learn from all of them what we need to research next to improve patient survival.”
13 years and counting
Jensen doesn’t hesitate when asked why he’s alive today.
“Dr. Bota has been a genius,” he says, “She was able to give me experimental treatments, was smart enough to figure out which ones to do, change them when they stopped working, and get me onto something else.”
Jensen’s treatments have included surgeries, two radiation therapies (IMRT and Gamma Knife radiosurgery) and participation in many clinical trials of new chemotherapy drugs. He even achieved remission for four years from 2011-2015.
When the tumor began to re-emerge in 2016, Bota asked if he would like to join a clinical trial for a new device called Optune™. Jensen jumped at the chance.
Optune™ is an FDA-approved portable device worn on the head. It hits cancer cells with a low-intensity electrical field tuned between microwave and ultrasound frequencies. The alternating electricity, called tumor-treating fields (TFF), disrupts the ability of the fast-growing cancer cells to divide and multiply, but doesn’t harm slow-growing normal brain cells. It must be worn at least 75% of the day.
Jensen says he averages 82% of each day, taking the device off just long enough to shower, shave his head and give his scalp a little break. It raises his scalp temperature by as much as 5 degrees, so he needs to stay out of the sun and heat, which can be a challenge for the Palm Springs resident.
Now 59 years old, Jensen says the treatment is working well. He augments it with the chemotherapy drug Avastin, which he says is manageable. His tumor is still there but tiny — 2 x 4 millimeters — and it hasn’t grown for the last two years.
“When I was first diagnosed with this tumor, the average life span was 12 to 15 months," he says. "Most people were dead within two years."
Jensen, who can tell you exactly how many days he has survived since his diagnosis 13½ years ago, marvels at the care he has received.
“Dr. Bota stops at nothing to keep me on the right track with the treatments that keep me alive and improve my quality of life.”
Watch Jensen and Bota discuss his cancer journey ›
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