Brenda Crosby, a retired high school teacher from Eddington, Maine, always loved to golf, but today, a round on the greens has new meaning.

Pat Ponticelli, a medical nutrition therapist from Amesbury, Mass., just returned from a trip visiting her three grandsons in Seattle. That might not sound remarkable, but to Ponticelli, it is near miraculous.

That is because Crosby and Ponticelli have glioblastoma multiforme (GBM), one of the deadliest forms of brain cancer. With radiation and chemotherapy, the median survival rate for adults is about 11 to 15 months, according to the American Brain Tumor Association.

Despite the odds, Crosby and Ponticelli have both been living with the disease for more than two years. So, when Crosby gets a chance to play golf with her husband or girlfriends, it is not about her score, it is about the experience. When Ponticelli gets a chance to fly cross-country to see her family, she looks on the bright side. “I don’t like flying, but it is worth it,” she says.

Together with family and friends, they have grieved their diagnosis. But together with family and friends, they have also found—and continue to find—reasons to hope.

“God has blessed me,” Ponticelli says.

Why me?

The odds of someone developing a malignant tumor of the brain is less than one percent, according to the American Cancer Society. Brain tumors may be rare, but in 2018, GBM made headlines when Senator John McCain lost his battle with the notoriously aggressive brain cancer. It also was the cause of death for two other high-profile political figures: Ted Kennedy and Beau Biden.

Neither Crosby nor Ponticelli could have predicted that what started, for each of them, as a headache would end in terminal illness. Both had fulfilling careers and busy, happy lives, when they were diagnosed. That is part of what makes glioblastoma so devastating, explains Nadine Linendoll, oncology nurse practitioner at Tufts Medical Center. Patients are usually middle-aged or older, so they might be in the height of their career, retired or nearing retirement, or enjoying grandchildren.

“[The GBM diagnosis] was 100 percent surprising,” Ponticelli explains. “I am a medical nutrition therapist, and I think I take care of myself well. I remember saying to my friend, ‘How did this happen to me?’”

A daily Catholic mass goer, Ponticelli found strength in God and her church community. “After the initial, ‘Did you get the license plate of the truck that hit me?’ feeling, it was easy to adjust,” she says. “Well, kind of easy. It is not easy to hear how long you are going to live.”

Crosby had just returned to work after the holiday break when her health spiraled. She recalls having trouble finding her words while she was teaching. “Later, I went down the hall to ask my friend, the school nurse, about her vacation. She asked how long my lip had been drooping. I said I wasn’t sure—I hadn’t noticed.”

Crosby went to a health clinic, then the hospital. She remembers being placed on a gurney and rolled to a CT scan. “They thought it was a stroke, but the scan came back showing a growth on the right side of my head.”

After her surgeon removed the tumor, a biopsy confirmed GBM. “Thank God my husband was listening to what the doctor was saying because I was not,” Crosby recalls. “I just fell apart.”

Taking back control

Crosby and Ponticelli have accepted there is a lot they can’t control about their diagnosis. For example, both women had to stop working full-time so they could focus on their health. But there are some things they can take control of. They both use a wearable, portable treatment called Optune. It is an FDA-approved treatment prescribed with the oral chemotherapy Temozolomide (also called Temodar^® or TMZ) for patients with newly diagnosed GBM, or prescribed alone for recurrent patients. Crosby and Ponticelli both are ambassadors for the treatment, which means people considering it can contact them to ask questions.

Ponticelli learned about Optune from her doctor, Eric Wong, a neurologist and co-director of the Brain Tumor Center at Beth Israel Deaconess Medical Center, after her body did not respond well to chemotherapy.

“For recurrent GBM, Optune had similar outcomes to chemotherapy, so I was like, ‘Guess this is what we are doing,’” Ponticelli says.

Crosby started the treatment after she completed radiation and chemo. Her doctor recommended it to her and her husband based on a large clinical trial. They researched it online and felt it was their “best option,” she recalls.

Optune was created by Novocure, the oncology company behind an innovative therapy called Tumor Treating Fields (TTFields) that uses electric fields tuned to specific frequencies to disrupt GBM cell division. Optune works by delivering TTFields to the location of the GBM tumor. Patients shave their head so they can adhere the arrays—that is, adhesive pads—to their scalp. The arrays are powered through a connection cable and box, with a battery. The full device weighs 2.7 pounds, and delivers wave-like electric fields which slow or stop glioblastoma tumor cells from dividing and may even destroy them.

Crosby explains she was hesitant at first. “I was worried because you have to shave your head. I wore my hair short, but I still wasn’t crazy about that,” she says. “My husband shaved my head, and Novocure sent a device support specialist to show him how to put the arrays on my head.”

“The first week or so I was very self-conscious about going outside with it, but my friends and family have all given me hats—I have quite the collection,” Crosby continues. “And after a couple of weeks wearing Optune, it became second nature.”

Patients are recommended to wear Optune 75% of the time, or at least 18 hours a day, and they can set their treatment schedule. So, when Crosby wants to golf, she turns off the device, tucks the cords under her hat, and does “whatever, maybe lunch with the ladies.”

Crosby considers herself lucky. Her doctor told her that based on a large clinical trial, using Optune with chemotherapy may give her a greater opportunity to live longer than those using chemotherapy alone (43% vs. 31% at two years). In her experience, “the only thing [side effect] is I get sores on my head from the adhesive gel, so I have to take breaks from time to time.”

A self-declared extrovert, Ponticelli doesn’t mind looking different. “I don’t even wear a hat unless it is cold. My doctor says to put a hat on because people are going to stare. I say, ‘I don’t care if people stare. They need to know what is going on.’”

Like Crosby, the adhesive gel tends to bother her skin. Ponticelli is divorced, so her friend Kathy, a registered nurse, helps her apply and remove the arrays. Research shows that the more you wear the device, the better the results. When Ponticelli first started, she was disappointed to learn her usage was at 87%.

“I am an overachiever. I have never gotten an 80 percent in my life,” she says.

With the help of Kathy and a support specialist, she got her usage up to 95%.

Comfort matters

As an oncology nurse practitioner, part of Linendoll’s job is to decrease suffering and improve quality of life for her patients. This means considering emotional and spiritual wellbeing, not just physical health. It also means urging patients and their families to take advantage of all the treatments and services available to them.

Linendoll works with Brenda’s doctor, Dr. Suriya Jeyapalan, the medical director of neuro-oncology at Tufts Medical Center. Jeyapalan has been treating people with brain tumors since about 1999. When she first began, the two-year survival rate for patients with GBM was dismal—less than 10%. In the past 20 years, just two treatments for newly diagnosed GBM have been approved by the FDA—Temozolomide and Optune.

Jeyapalan was an investigator in the Optune clinical trial for newly diagnosed GBM. In fact, Tufts enrolled 17 patients in the study. She notes patients are often more willing than doctors to try alternative treatments.

Jeyapalan notes there is no telling who will respond well to Optune and who will not, but she recommends it to all of her patients who are newly-diagnosed with GBM. She says, “It is something that has never been done before—using electric field treatment for cancer. And from what I can tell from my own experience, it can be done with limited additional toxicity.”

Looking forward

Linendoll tells patients there is always reason to hope, and what they hope for can change. Perhaps they are hoping they will respond well to surgery, radiation, chemo, or Optune. Or, they might be hoping they will make it to an important event, such as a grandchild’s graduation.

Crosby is hopeful. She and her husband are spending the winter in Florida. Since he is newly retired, they are hoping he can join her on the golf course more frequently.

Ponticelli is hopeful, too, and grateful for her family, friends, and faith. Kathy often reminds her of how when she was first diagnosed with GBM, it rained almost every time they drove to Boston for treatment—but they always saw a rainbow.

“[GBM] is a tough pill to swallow. But I have a lot of people who have been good to me, and I have faith in God,” Ponticelli says. “I think everything is going to be okay.”