After losing her childhood friend to Glioblastoma, Healthline contributor Cathy Cassata is working to raise awareness about brain cancer and the promising treatments on the horizon.
I met my friend Lara when we were five years old. Her pigtailed, dark hair, and deep brown eyes caught my attention. She reminded me of a Precious Moments doll.
We instantly became friends. We had numerous sleepovers, hangouts, and softball games together.
As teenagers, we went to record stores, concerts, the mall, the movies, and roller-skating rink together. We helped each other navigate our first heartbreaks, took our first drive around town together, had our first drinks together, went on our first trip without parents together, and bodysurfed for the first time together at an Offspring concert.
Lara was deep and thoughtful and funny, in a dark humor kind of way. She was intelligent, the kind of smart that never required her to study and somehow still ace tests. She had the best memory, too; almost photographic. I counted on her to recall details about times and places and people from our childhood.
Family was always Lara’s priority. I knew someday her own family would be the center of her world. She was dedicated to her husband and their four children, who are left to make sense of losing her to brain cancer at 45-years-old.
Lara was diagnosed with glioblastoma in December 2022. She passed away just 8 months later.
She is one of the 10,000 people in the United States who succumb to glioblastoma every year.
Glioblastoma is a fast-growing, aggressive brain tumor that typically affects people over the age of 65. The disease occurs in 3.21 per 100,000 population.
“The incidence is growing somewhat. We are seeing it more and more in young people. We don’t know why,” Gita Kwatra, PharmD, CEO of the Glioblastoma Foundation, told Healthline. “It used to lean toward being an older person disease but now we are seeing this age group 18 to 39 and even 40 to 50 also, they call them adolescent and young adults, which is a loose way to describe them, but it’s a category of glioblastoma that is different than the normal we see.”
However, Dr. Jigisha P. Thakkar, neuro-oncologist at Loyola Medicine in Chicago, said incidence of glioblastoma has been stable.
While more data is needed to confirm a rise in incidence and whether a rise in incidence is occurring in certain age groups and populations, one
A total of 100 patients were diagnosed with the disease, which indicated an increase in incidence from 0.73 to 4.49 per 100,000 over the 10-year period.
The study authors point to multifactorial reasons as possibilities for the increase in certain groups, such as an aging population, overdiagnosis, ionizing radiation, air pollution, and more.
The average length of life after diagnosis of glioblastoma is about 8 months.
The aggressiveness and rapid pace at which it grows make it hard to treat.
Dr. Kaylyn D. Sinicrope, neuro-oncologist at Norton Cancer Institute said while a defined mass on imaging can be seen, there are often cancerous cells remaining that are invisible on imaging.
“This infiltrating or ‘root-like’ behavior of the tumor makes complete surgical resection of glioblastoma impossible,” she told Healthline.
Additionally, not all medications can freely reach the brain when they are given, which limits treatment options, said Thakkar.
The reason treatments cannot reach the brain tumor are due to the
“Its job is to really keep things out of the brain so when you’re talking about getting treatment into the brain, you really have to make sure that those treatments can get through the blood brain barrier,” said Kwatra.
Scientists now focus on finding treatments that will break through the BBB, she added.
“[For years,] they were trying treatments that worked in other parts of the body but weren’t going to work in the brain because of that blood brain barrier,” said Kwatra.
Standard of care for glioblastoma is surgery followed by radiation and chemotherapy. The goal of surgery is to remove as much of the tumor as possible without harming the surrounding normal brain tissue.
“Surgery on the brain is very risky. The thing about this cancer is it forms these little tentacles that invade the entire brain. You can never truly get rid of it completely; it comes back,” said Kwatra.
However, she said surgery has shown to have a positive impact on survival, if 90% or more of the tumor is removed.
“Chemotherapy and radiation have not been shown to prolong survival. They are terrible for quality of life,” she added.
Some doctors recommend a cap that is worn on the skull called Optune. The device delivers Tumor Treating Fields (TTF) to disrupt tumor cell division in the brain and kill tumor cells.
“TTFs have prolonged median overall survival by 4.9 months in [glioblastoma] patients,” said Sinicrope.
However, Kwatra wants
“For some patients, it gives them two or three years of survival and others they stop using it after one or two months and they don’t like it and the tumor keeps growing, so to find the patients it works for really well, needs more research,” she said.
Immunotherapy is another form of treatment that uses the body’s own immune system to attack cancer. Sinicrope is hopeful about these therapies. She said some have significantly prolonged survival of glioblastoma patients in recent phase
“This is an active area of ongoing research that I hope will alter the standard of care for glioblastoma,” she said.
In the past, immunotherapy that was effective in treating melanoma cancers on the skin were used to treat glioblastoma without success.
“The type of immunotherapy used now is distinctly different from checkpoint inhibitors used in melanoma and other cancers. which release the brakes on our immune system without specifically targeting the tumor,” said Sinicrope.
Targeted therapies are therapies designed to specifically attack cancerous cells or pathways that cancerous cells rely on.
“These are different from radiation or standard ‘cytoxic’ chemotherapies, which are more nonspecific compounds typically toxic to rapidly dividing cells,” said Sinicrope.
In many of her patients, she said targeted therapies are often (though not exclusively) better tolerated than traditional chemotherapies.
Advances in molecular diagnostic techniques in recent years provide information about different mutations in a particular tumor.
“A molecular test called ‘next generation sequencing’ helps determine the driver mutations,” Thakkar said.
Based on the molecular genetics of the tumor, doctors prepare a customized treatment plan with targeted therapies that have potential to get through the BBB and reach the tumor.
“Patients have better outcomes with these individualized treatments,” Thakkar said.
The Glioblastoma Foundation is putting efforts toward awareness and funding for targeted therapies. It is also focused on making existing medications accessible to glioblastoma patients.
One medication Kwatra believes is promising is Osimertinib, which is FDA approved to treat non-small cell lung cancer. However, she said it could be effective at treating associated metastasis to the brain.
“We estimate based on initial [pre-clinical work] that we’ve done that it can help 20 to 25% of all glioblastoma patients. [Once] it got approved for lung cancer…[the manufacturer] kind of dropped glioblastoma as an indication for this drug,” she said.
Additionally, the drug Lomustine is FDA approved for recurrent glioblastoma and is used as the standard of care. However, the high cost of the medication makes it impossible for most patients to access. At one point, it cost $50 per pill and now costs over $2,000 per pill.
“Lomustine has been shown to double survival once the tumor comes back,” said Kwatra. “We’re working with a pharmaceutical company to manage the full drug product and get it out to patients for as close to that $50 as we can.”
In the last year, researchers have seen the 5-year survival rate for people with glioblastoma increase from 5% to about 6.8%, said Kwatra.
“A lot of times we hear from patients whose doctors tell them to go home and get their affairs in order because they picked the wrong end of the straw and there’s nothing that can be done,” she said.
With more awareness of glioblastoma, more research, and more clinical studies, she said more promising and accessible treatments can change this mentality and the outcome of the disease for people like Lara.
“There are amazing doctors out there who are…working to just simply get a cure with no glory involved and no scientific papers to speak of,” Kwatra said. “They are already doing amazing work but, in the years to come, I think there is so much to be hopeful for.”