Clinician Couple Finds Themselves Faced with an Unimaginable Diagnosis
When Ken and Patricia Levy boarded their flight to Italy, they were eager for a brief respite from their busy lives as clinicians in Phoenix, Arizona. With Ken working as an internal medicine doctor, and Patricia as a child psychiatrist, the couple was in constant motion making this vacation all the more welcome.
Two weeks in Europe flew by in what felt like two minutes. Nearing the end of their trip with a final stop in Florence, the Levys decided to grab lunch at a local restaurant. While enjoying the afternoon sun on the patio, Patricia began experiencing a sharp headache accompanied by flashing lights. She and her husband suspected a migraine and returned to their hotel room so Patricia could rest.
Upon entering the room, Patricia’s headache became earsplitting with the pain only sharpening and no relief in sight. In that moment, Ken watched in disbelief as his wife’s body stiffened and began to jerk rapidly. Recognizing the movements as a seizure, Ken rushed Patricia to the nearest hospital.
A CT scan revealed Patricia had a brain tumor. The doctors explained it was imperative that the couple go to the neurosurgical hospital in Florence or return home immediately for a thorough medical evaluation.
The Clock Starts Ticking
Upon leaving the hospital, the race to return home began. Ken explained, “We were hospitalized there in Florence and we had to make our way home, which wasn’t easy after Patricia just had a seizure…”
The Levys quickly arranged flights home and throughout the course of the journey, their minds raced with the possibilities of what lay ahead of them. The couple planned to visit Barrow Neurological Institute, which happened to be located right around the corner from their home in Phoenix.
“Our friends wanted to bring us straight to Barrow from the airport, but after 24 hours of travel, we decided to go home and get some rest first,” recalled Ken.
The following morning, Patricia and Ken visited the emergency room at Barrow and had their first consultation with Nader Sanai, MD, neurosurgical oncologist and director of the Ivy Brain Tumor Center. Having only referred patients to Barrow in a professional capacity, Ken and Patricia were thrust into unfamiliar territory as they were now the patients instead of the clinicians. Dr. Sanai explained that Patricia needed surgery as quickly as possible. Exactly one week later, the couple was in a post-operative room at Barrow as Patricia recovered from her first brain surgery. The pathology report confirmed the tumor was glioblastoma, the most aggressive form of brain cancer and the most difficult to treat. Their worst fears had now been realized.
Glioblastoma’s Relentless Return
“After the surgery, we started the standard treatment of radiotherapy and a chemotherapy called temozolomide, but after about a year it stopped working,” said Patricia.
A routine MRI showed Patricia’s glioblastoma had returned. With unparalleled resilience, Patricia knew the fight was not over, stating, “Honestly, even as a physician, I was very afraid of neurosurgery, but I think the neurosurgeons here at Barrow are very competent and the nature of this tumor is that you have to go in every time it comes back so you have to lose that fear and just do the best you can.”
From the beginning, Ken had been on the hunt to find the best new treatment options for his wife. He consulted with many medical institutions and even attended the world’s largest annual neuro-oncology conference which happened to be in Arizona that year. “The standard of care is usually not good enough. Therefore, participation in a clinical trial is crucial to get more therapeutic help and to benefit future patients,” stated Ken. His extensive research led them right back to Dr. Sanai at the Ivy Brain Tumor Center, home of the largest Phase 0 clinical trials program in the world and the first of its kind in neuro-oncology. Advanced genetic screening qualified Patricia for a Phase 0 clinical trial evaluating a newly developed targeted therapy, called infigratinib.
“The Ivy Center’s Phase 0 clinical trial approach removes the guesswork of conventional clinical trials which routinely take months to inform a patient if a therapy could be working,” said Dr. Sanai. “Our specialized in-house laboratories measure the effects of a treatment on a patient’s tumor within 10 days of surgery, allowing faster treatment decisions to be made.”
Patricia enrolled in the clinical trial and took the experimental therapy for five days leading up to her scheduled surgery to remove the new tumor growth. By the time she returned for her post-operative visit, Ivy’s team of scientists had determined the drug was indeed reaching her tumor and modulating its target, so she continued receiving the therapy for two months in an expansion phase of the trial.
“The drug worked for a while, but eventually my tumor outsmarted it. Unfortunately, that is the nature of glioblastoma, the tumor bypasses whatever chemotherapy you are doing.” Patricia said.
Imaging showed a new tumor on the other side of her brain. Once again, the couple was pitted against their mortal enemy and knew they had to throw everything at it.
“We are the embodiment of that kind of strategy. We don’t dance around the edges. We’re here to win. And the people on our team are only focused on that,” said Dr. Sanai.
No Time to Waste
The Ivy Center’s unique program allowed Patricia to be quickly diverted to another study with a newly developed drug combination that could be more effective for her. The Phase 0 trial again confirmed that the study drugs were having an effect on her tumor and she was able to continue receiving the treatment.
“So, our plan at this point is to keep trying new things and buy as much time as we can.” Patricia stated. “If this medication would just put a halt on the cancer’s growth and I could maintain this level of functionality; we would be perfectly happy.” Ken added, “This disease is a tough fight, perhaps one of the toughest. But patients and their families are not fighting alone! Some of the brightest minds in medicine are working on glioblastoma around the clock. You must present yourself to them at Barrow Neurological Institute and the Ivy Brain Tumor Center.”
To learn more about Ivy Phase 0 clinical trials, visit ivybraintumorcenter.org/phase-0-clinical-trials or contact an Ivy Navigator today at 602-406-8605.