As a customer service representative, Susan Rooney spent a lot of her day typing in front of a computer screen. One day, she noticed typing became inexplicably difficult.
“I suddenly had to think about where to place my fingers while I was typing,” said Rooney. “It wasn’t automatic like it used to be.”
Later, she realized her symptoms were becoming more problematic when she couldn’t open the plastic produce bags at the grocery store or put vegetables inside. Initially, her doctor suspected she had suffered a minor stroke, but with frustration and concern mounting, Rooney sought additional help from a neurologist.
In June 2013, a magnetic resonance imaging scan revealed the cause—an incurable, stage IV malignant brain tumor or glioblastoma.
“It came as a total surprise,” said the otherwise healthy Rooney. “The first words out of my mouth were, ‘I can’t do this right now.’ My partner was undergoing treatment for esophageal cancer and my daughter was about to graduate from high school.”
Rooney’s surgeon agreed to wait until after her daughter’s graduation to remove the tumor from her right frontal lobe. A few days after the ceremony, Rooney was in an operating room.
Glioblastoma is a rare but fast-growing type of central nervous system tumor that forms from glial (supportive) tissue of the brain. According to the National Cancer Institute, brain and other nervous system cancers make up 1.4 percent of all new cancer cases in the United States. In 2015, an estimated 22,850 will be diagnosed with this disease. The American Brain Tumor Association says median survival after diagnosis is 14.6 months, with 30 percent of patients living two years and 10 percent living five years or longer.
Video: Beating Brain Tumors One Trial at a Time
Susan Rooney was diagnosed with a brain tumor days before her daughter’s high school graduation. It was stage 4, generally considered incurable. After surgery and chemotherapy proved ineffective, Rooney joined a clinical trial testing a new drug – one of several leading edge therapies offered at Moores Cancer Center at UC San Diego Health. Today, the tumor is stable and under control and Rooney is again enjoying life.
After surgery, Rooney was transferred to Moores Cancer Center at UC San Diego Health for radiation and chemotherapy treatment and the opportunity to enroll in a clinical trial.
“Standard of care for my type of cancer wasn’t working. At one point, the tumor was preventing me from walking, driving and even getting dressed,” Rooney said. “I thought let’s try the trial. It can’t be any worse than how I’m feeling right now.”
The first trial failed to reduce her tumor, but in January 2014, Rooney was enrolled in a second trial that shrunk her tumor from the size of a half dollar to dime size.
“We typically say this is an incurable tumor that comes back eventually,” said David Piccioni, MD, PhD, director of neuro-oncology at Moores Cancer Center. “We will monitor Susan for tumor recurrence for the rest of her life, but for now she is doing remarkably well.”
Rooney was enrolled in a Phase II trial testing disease response, side effects and survival rates of treatment with the drug nilotinib, which was being used for the first time in patients with recurrent gliomas that often become drug-resistant. Rooney will remain on nilotinib – already approved by the Food and Drug Administration for other types of cancers – as long it appears to keep her tumor stable and under control.
The National Comprehensive Cancer Network (NCCN), a non-profit alliance of leading cancer centers devoted to patient care, research and education, produces guidelines for treatment by types of cancers.
“For gliomas, the NCCN suggests all patients be enrolled in a clinical trial,” said Piccioni. “Starting a patient on a clinical trial early in treatment may impact the progression of the disease and survival rate.”
At UC San Diego Health, a comprehensive brain tumor program offers the latest advances in care, including molecular profiling, a portable device that uses alternating electric fields to treat glioblastoma called Optune, MRI-guided laser technology and access to clinical trials investigating the latest immunotherapies and vaccines.
“This is a difficult disease,” said Piccioni, San Diego’s only board-certified neuro-oncologist. “You want to be under the care of an expert who specializes in nothing but brain tumors and who has access to the most advanced treatment options and clinical trials.”
Piccioni, who has a medical degree in neurology and a doctorate of philosophy in neuroscience, said his educational background has given him a unique understanding of neurologic problems associated with brain tumors, including headaches and seizures.
“My fellowship training in clinical pharmacology and in neuro-oncology prepared me to treat patients using personalized medicine and conduct clinical trials on how drugs interact with each other and the body at a cellular level.”
Piccioni’s expertise, combined with UC San Diego Health specialists in neuro-psychology, neuro-surgery, neuro-radiology and radiation oncology, means patients like Rooney are receiving comprehensive treatment under one roof.
“I don’t think I would be here if I hadn’t enrolled in the trial,” said Rooney. “It has given me a second chance.”
Rooney said she still has trouble with buttons and typing and needs to use her right hand to text her 20-year-old daughter, now in college studying veterinary medicine. She is, however, walking again and back to her favorite hobby.
“Quilting is a bit more difficult than it used to be. I have trouble getting the fabric together, but I work at it until I get it. Sometimes I have to rip it apart and start again, but I’m thankful for what I can do for myself and that I can spend time with my kids, family and friends. Life is good.”
Patients interested in learning more about this clinical trial can call Bradley Brown at 858-822-5377 or Lara Rose at 858-822-6575 to speak with a clinical trial coordinator.
Care at UC San Diego Health