Preston A. Wells Jr. Center unites tumor fighters
The Preston A. Wells Jr. Center unites eclectic mix of clinicians, researchers to help people with brain tumors
Kevin Carroll was leaning on his bicycle this summer at a scenic overlook along the Hawthorne Trail, a 17-mile stretch that connects Gainesville with Hawthorne through Paynes Prairie State Preserve.
Thigh-burning hills and wildlife encounters come with the scenery here, but the 50-year-old father of three's most challenging journey actually began several months earlier on April 5. It started with a crash to his bedroom floor in the middle of the night.
"I was scared to death," remembers Genevieve Carroll, Kevin's wife of 10 years. "I found Kevin on the floor. He was disoriented, and his mouth was bleeding. He was having a seizure."
Five days later, Kevin was in a neurosurgical operating room at Capital Regional Medical Center in Tallahassee. Doctors removed an extremely aggressive cancerous brain tumor known as a stage 4 glioblastoma, or GBM, from his left parietal lobe.
It was the same kind of tumor that was diagnosed in the same region of the brain in Sen. Edward Kennedy in May.
Traditionally, despite aggressive treatment with surgery, radiation therapy and chemotherapy, the tumors are considered fast-acting and incurable.
"Kevin is a vegetarian, a cyclist, a very laid-back person," Genevieve says. "He takes things as they come, and he likes to make relaxed decisions. It's his disposition. Before the surgery, he said, ‘Let's go get that golf ball.'"
Shortly after surgery, the Carroll family went to work on the Web to find out more about his type of cancer and what the treatment options were. That investigation led to Erin Dunbar, M.D., a UF neuro-oncologist who has spent much of her adult life acquiring the skills to help people in situations similar to what the Carroll family was facing.
"Everyone finds what they are good at, and for me, that is caring for patients with brain and spine tumors," Dunbar says.
The walls in her McKnight Brain Institute office have some space for pictures, but Dunbar's whirlwind pace since she joined UF as an assistant professor of neurosurgery in 2007 hasn't afforded much opportunity for her to hang anything. More likely you will find graphics that explain brain and spinal cord physiology to patients or students.
"I see my mission as always attempting to increase a patient's length of life — but knowing that when that's not achievable, I can improve their quality of life along the way," she says. "It's about helping patients live their best life and being there as an advocate/adviser as they navigate that journey."
A simple plan
A scant four years ago, Dunbar was a resident in internal medicine at the UF College of Medicine. Even then, she was collaborating with William Friedman, M.D., chair of the department of neurosurgery, and many others on a vision for a comprehensive neuro-oncology center for all brain and spine tumor patients. This quest led her to top-tier brain tumor centers to observe their practices and then bring that knowledge back to UF.
"The vision of Dr. Friedman was paramount in this," Dunbar says. "As I traveled and interviewed, I shadowed brain tumor centers to experience the best operational models. I interviewed for dedicated neuro-oncology fellowships at a select number of those centers, and I ultimately chose Johns Hopkins, partly because I felt it was the best model that could be translated back to UF."
Today, she and Friedman co-direct the Preston A. Wells Jr. Center for Brain Tumor Therapy. The center was formally named in 2006 after the university received a $10 million gift from the Lillian S. Wells Foundation Inc., a Fort Lauderdale-based group that supports medical research.
In fact, the Preston Wells Center is considered necessary to transform UF, which is already among the nation's leaders in numbers of neurosurgeries, into a top 10 tumor center in terms of referrals, clinical trial offerings and translational research.
"We've been working hard to establish one of the nation's leading comprehensive brain tumor centers," Friedman says. "Our strength has been surgery, and we are also known around the world for radiosurgery. With the gift to establish the Preston Wells Center and the recruitment of Dr. Dunbar, who already has a number of investigational treatment protocols under way, we have an extremely broad, courageous vision."
Tumor treatment has been a hallmark at UF since the 1980s, when Friedman and physicist Frank Bova, Ph.D., were perfecting radiosurgery systems that used linear accelerators to noninvasively remove cancerous tumors.
As this new technology and expertise blossomed in the neurosurgery department, the radiation oncology department strongly focused on patient care in its efforts to become one of the best academic programs of its kind in the country.
"Today what you have is this tremendous group of people talented in neurosurgery and radiation/oncology, along with the collection of basic and translational researchers here at the McKnight Brain Institute," Dunbar says. "What we were missing was someone with dedicated neuro-oncology training, and that's what my recruitment provided."
As a neuro-oncologist, Dunbar discusses a patient's treatment strategy with a health-care team that includes neurosurgeons, radiation oncologists, neurologists, psychologists and therapists. After a patient's surgery or radiation treatment, Dunbar pursues additional multidisciplinary treatment efforts.
That could mean combining conventional therapy with one of the center's many clinical trials, which are research studies to learn about vaccines or new therapies, combinations of medicines for symptom management, or combinations of rehabilitation, education and support services.
"Our goal is to optimize the patient's opportunities and well-being at every stage of their journey," Dunbar says.
On the upbeat
The green hills of Hawthorne stretched before Kevin Carroll when his phone rang.
"We were on the Hawthorne trail at the overlook when I got the phone call that I was in," Kevin says. "I was among the 25 percent of people whose tumors were of the right composition for a certain kind of clinical trial."
Kevin, a food service manager and a doting dad to three children who range in age from 11 to 3, had been previously denied enrollment in a different clinical trial. Even the latest news did not finally mean he would be involved in an experimental therapy.
"We got the message that he was in; well, he was mostly in," Genevieve says. "The first hurdle in this case was the majority of the tumor has to be removed, or at least as much as you can visibly see. This was the second hurdle — the tumor had to contain a protein that only 25 percent of GBM patients have to be suitable for the treatment. And in this case, even once you're in the trial, not everyone gets the vaccine. Dr. Dunbar said it would be a real roller-coaster ride and she described it perfectly."
As with Sen. Kennedy, who was placed on a regimen of chemotherapy and radiation after his tumor was removed, Kevin received this therapy and also became part of a clinical trial that was testing a new treatment technique.
Some glioblastoma trials are looking at a vaccine injected into the skin to attempt to activate the patient's own immune system to fight microscopic tumor cells that remain in the brain even after optimal surgery and radiation. Patients enrolled in such studies know there are no promises — the treatment has not proved effective yet.
The American Cancer Society estimates that 21,000 Americans a year are diagnosed with brain tumors; about 10,000 are gliobastomas. Brain tumors are the second most common cause of cancer-related death in people 35 and under, and the most common among middle-aged and older adults.
Not ‘garden variety'
Addressing the problems of tumors and other neurological ailments, UF and Shands HealthCare opened a new, 30-bed Shands at UF Neuro Intensive Care Unit this spring. The $9.6-million project provides neurosurgery and neurology patients access to UF medical experts and the latest technological resources consolidated at Shands at UF, all in proximity to the basic science research taking place at the McKnight Brain Institute.
"This is all about improved outcomes for patients," Friedman says. "Another key part is bringing in basic scientists who can help us develop novel approaches to the treatment of this devastating disease. Recently Brent Reynolds, an internationally regarded scientist noted for his groundbreaking work with stem cells and brain tumor stem cells, joined the neurosurgery department and the McKnight Brain Institute. We think some of his approaches to modify stem cells will lead to completely new approaches to treat patients."
Reynolds heads the MBI Cancer Stem Cell Group, a broad coalition of researchers that includes Dunbar, MBI Executive Director Dennis Steindler, Ph.D.; Edward Scott, Ph.D., director of the program of Stem Cell Biology and Regenerative Medicine; Chris Cogle, M.D., an assistant professor of medicine; C. Parker Gibbs,M.D., an associate professor of orthopaedic oncology; Emina Huang, M.D., an associate professor of surgery; Zhen Su, M.D., an assistant professor of urology and pharmacology; Eric Laywell, Ph.D., an assistant professor of anatomy and cell biology; Amy Smith, M.D., director of the pediatric neuro-oncology clinic; and Angelo Vescovi, director of the Stem Cell Research Institute at the H. San Raffaele Scientific Institute in Milan, Italy.
By studying cancer-initiating cells from tumors in the brain, prostate, colon, bone and other regions, the scientists intend to learn the fundamentals of how tumors form and cancer spreads.
"Our discoveries in collaboration with the Preston Wells Center could transform treatment of brain cancer," Steindler says. "The Preston Wells Center is the arm that will allow us to translate basic and preclinical science to the clinic and develop new therapies."
In the meantime, leaders expect that patient numbers, as well as patient-care options, will continue to grow, especially as more clinical trials become available.
Part of the Wells endowment provides funds for a "patient navigator," which gives patients, caregivers or referring physicians a single contact point to learn about treatments, coordinate visits and assist them with all of their needs.
"Bill (Friedman) and I have a personal philosophy that if a brain tumor patient needs to see us, we will do everything we can to help them immediately," Dunbar says. "Even if it's on a non-clinic day, we will open the clinic."
In addition, services such as neurological rehabilitation, psychological assessment and counseling are essential to brain tumor patients receiving care at the center.
Deidre Pereira, Ph.D., a licensed psychologist and assistant professor in the department of clinical and health psychology at the College of Public Health and Health Professions, is experienced at treating distress in people affected by cancer. She has increasingly worked with neuro-oncology patients through her association with Dunbar and has assessed a number of Dunbar's patients and their families. When needed, she makes recommendations for psychological services.
"I didn't know as much about brain tumors before working with Erin, and it has been a really impactful experience for me," she says. "These patients can have extreme deficits in their quality of life and the suddenness of the symptoms and diagnosis can be overwhelming. They have quite a journey."
Pereira said her association with Dunbar highlights the importance of caring for patients as whole persons, and that psychosocial services are indeed available to these patients and their families.
"We have a very strong education and support group," Dunbar says. "We meet monthly and have patients that come from the tri-state area that may not even see me or the (UF) doctors. They say, ‘I've never set foot in Gainesville, but I'm here for the support group,' which is really great."
In the neurosurgical clinic waiting area near the Atrium at Shands at UF medical center, Genevieve displays a cell-phone picture of Kevin on his bike talking on his cell phone.
He was talking to his eldest brother who was flying in for his week at Hope Lodge," she says. "It's kind of funny because before the tumor Kevin didn't have a cell phone and rarely used anything electronic unless it was for work."
Visits with his mother and other family members, many of whom live in Buffalo, N.Y., increased dramatically after Kevin was diagnosed, with plenty of time for catching up either at the Carroll home in Tallahassee or at the Gainesville Hope Lodge, an inn for patients and caregivers supported by the American Cancer Society, the Winn-Dixie Foundation and the University of Florida.
"Kevin was very fortunate to have a family member or dear friend with him each of the six weeks he was receiving daily radiation and chemotherapy," Genevieve says.
Inside the clinic, Dunbar was speaking to Kevin about energy levels.
"I've heard my patients say it's like they wake up with as much juice as they've always had, but it runs out far more quickly," she says. "You should experiment with rest and naps."
Not a problem for Kevin, who is known to actually doze off during his radiation treatments. Told that the medical machinery that delivers the radiation was actually developed by Friedman and other UF colleagues, Genevieve says, "It goes to show you. More proof that we are where we are supposed to be."