Facing Glioblastoma with a Smile
Wearing a broad smile on his face and electrodes on his head, Nate Tomlin greets strangers he passes in the hallways of Barrow Neurological Institute.
“People always ask me why I’m so happy all of the time,” he said. “I’m just really enjoying life and going through fun aspects of my life.”
Between working hard to advance in his job and starting a family with his wife, Megan, Tomlin’s life doesn’t seem much different from that of many other 30 year olds—except for the fact that over two years ago he was told he had three to six months left to live.
The Deadliest of Brain Cancers
“It was like a punch in the face,” Tomlin said of the moment he learned he had a large brain tumor. A biopsy later confirmed the tumor was a malignant, or cancerous, tumor called glioblastoma multiforme (GBM).
Among adults, glioblastoma is the most common of the tumors that originate in the brain. With a median survival time of nine to 14 months after diagnosis, it is also the deadliest brain tumor. The tumor almost always grows back, and there is currently no reliable way to stop the growth of a GBM once it returns.
Tomlin first noticed symptoms of his GBM when he was driving home from class at DeVry University in Phoenix, where he was studying computer information systems. He had an unusual metallic taste in the back of his throat and sensed a foul odor. Feeling strangely disgusted, he pulled off Interstate 17. He then realized he could barely move. Then, just as suddenly as his symptoms appeared, he felt normal again.
Tomlin decided not to say anything to Megan, who was his fiancée at the time, until about a week and a half later when it happened again. While the two were out shopping, she witnessed him have a partial seizure and urged him to see a doctor.
A physician at Chandler Regional Medical Center ordered an MRI and called Tomlin the next morning saying they needed to discuss the results in person. When Tomlin and his mom arrived at the hospital, the doctor told them the scan showed a large brain tumor and immediately arranged a biopsy procedure. Tomlin can still easily recall the date he was diagnosed with GBM: Feb. 6, 2015.
The doctor told Tomlin that he needed another surgery—this time to remove as much of the tumor as possible. His mom started researching neurosurgeons and came across Dr. Kris Smith at Barrow Neurological Institute, who operated on Tomlin about two weeks later.
Road to Recovery
A week after surgery, while undergoing neuro-rehabilitation, Tomlin suffered a stroke caused by a blood clot in his brain. It weakened the right side of his body. He spent three weeks in the inpatient neuro-rehabilitation unit, frustrated that he was unable to take care of himself. He couldn’t write his name, couldn’t speak well enough to tell someone he was hungry, and would get lost while walking the hallways.
Tomlin struggled with depression after he returned home, but he continued his neuro-rehab on an outpatient basis.
“My physical therapist was the first one who got me to smile,” he said. “Things started getting a little better after that smile. I started making progress.”
That summer, on June 13, he and Megan got married.
“She said, ‘We’ll fight this together,’” Tomlin recalled.
In August, Tomlin started a program at the Center for Transitional Neuro-Rehabilitation (CTN), which was created to help people regain their independence and re-enter the community after suffering a traumatic brain injury or stroke, as well as to provide support for their family members. The staff not only helped Tomlin regain his independence but also helped him land a job at Wag ‘N’ Wash.
Tomlin graduated from CTN after 11 months, but he still visits his neuropsychologist, Jessica Matthes, every two weeks.
“I still don’t want to leave,” he said.
Otpune: Fighting Cancer with Electric Fields
Like most people with glioblastoma, Tomlin received additional treatment after surgery. He had 42 days of chemotherapy combined with radiation, followed by chemotherapy alone. He received the drug temozolomide (TMZ) five days per week for a total of 15 months.
While Tomlin was receiving chemotherapy, his neurologist at Barrow, Dr. Christopher Dardis, told him about a new device called Optune, which fights tumor cells with electric fields. Tomlin was immediately on board, saying he would try anything that might help fight the disease. But the U.S. Food and Drug Administration (FDA) had only approved Optune to treat GBM that had recurred or continued grow after chemotherapy, meaning Tomlin would have to pay for the device out of pocket to start using it along with TMZ.
The FDA reviewed Optune under its priority review program and, in October 2015, expanded the indication for the device to treat people with newly diagnosed GBM—making it completely covered by Tomlin’s health insurance.
The FDA based its approval on a large clinical trial of people with newly diagnosed GBM in which Optune was shown to delay tumor growth and extend survival. People who used Optune and TMZ together had a median of 7.2 months without tumor growth. In comparison, people who used TMZ alone had a median of four months without tumor progression. About half of the people who used Optune with TMZ were alive at two years or longer, compared to 32 percent who were used TMZ alone.
In a clinical trial of people with recurrent GBM, Optune was shown to be just as effective as chemotherapy, with a median survival of about six months for both groups. People with recurrent GBM who were treated with Optune alone self-reported better quality of life, including improved cognitive and emotional functioning, than those who were treated with TMZ alone.
When cells become cancerous, they undergo changes that cause them to divide uncontrollably and form masses called tumors. Optune creates low-intensity electric fields called tumor treating fields to stop or slow glioblastoma cells from dividing. It may also cause some of them to die. Because tumor treating fields do not enter the bloodstream like drugs do, they have not been shown to affect cells in other parts of the body.
Optune delivers electric pulses directly to the brain through adhesive electrodes called transducer arrays, which are attached to the scalp. The device is powered by rechargeable batteries and can be carried around in a specially designed backpack.
People are encouraged to wear the device for at least 18 hours per day, or 75 percent of each month. Tomlin has been wearing it for about two years and said he experiences the most discomfort in the summer months when the device heats up more than usual.
“I do believe Optune has helped,” said Dr. Smith, who now has several patients using the device. “He has undergone that therapy with great enthusiasm. He’s worn it extra time. He hasn’t acted like it’s a burden to him and has been really positive about it.”
Mind Over Matter
Dr. Smith believes Tomlin’s positive attitude is also a factor in Tomlin outliving his projected life expectancy, explaining that research studies have actually shown that attitude may play a role in helping the immune system fight disease.
“If it has worked for anybody, I attribute it to helping him,” Dr. Smith said.
While Tomlin’s experiences taught him not to take everyday things for granted that once seemed easy—things like speaking, writing, and driving—he said he is moving forward instead of looking back. His wife’s due date is Aug. 23, and Tomlin can’t wait to become a father and meet his son.
“I am so excited for him and his family,” Dr. Smith said. “They are just so positive and full of life. Every time I see him and his scans are stable, it just really makes my day. He’s a good example of someone who really takes his disease and accepts it but goes on and remains positive. He’s a great example to everybody—truly inspirational.”