By Lorraine Ash Daily Record
The crowd at Annunciation Center at the College of St. Elizabeth was all cheers and smiles Wednesday night as three top researchers presented the progress they’re making on their ovarian cancer projects.
“We can’t do our work without you,” said Dr. Michael Goldberg, a scientist at the Dana-Farber Cancer Institute at Harvard University.
He addressed more than 100 supporters at “We Remember, We Celebrate, We Believe,” an event sponsored by Kaleidoscope of Hope, which provided $50,000 to help Goldberg’s team, find a way to harness a woman’s own immune system as a force to work against her cancer.
“The immune system has been honed over the course of 500 million years and is much, much smarter than I am,” he said.
Since Kaleidoscope was started in 2000 by three ovarian cancer survivors from Morristown, it has grown to become the state’s primary advocate against ovarian cancer. It raises awareness and money, which is especially needed since the National Institutes of Health has been funding hundreds fewer research projects since sequestration began in 2013.
In the past 14 years, Kaleidoscope has granted $2.6 million for research, according to Carole Fagella of Warren, its vice president and a seven-year ovarian cancer survivor. Every cent was raised through the group’s activities—its May golf outing; its September walkathons in Morris, Monmouth, and Bergen counties; and its annual April gala.
“We have worked with the largest cancer centers throughout the United States, including the Mayo Clinic, MD Anderson Cancer Center, and Memorial Sloan Kettering Cancer Center,” Fagella said. “Our name is out there. We’ve even gotten grant proposals from Europe but we keep it in the states.”
This year, in addition to Goldberg’s work on a new treatment, Kaleidoscope awarded $50,000 to Laura Dillon, a postdoctoral fellow at the University of Virginia School of Medicine, to help her team look for ovarian cancer-specific microDNA.
Such a stable biomarker, she told the crowd, could be used to create a blood test for early detection of the disease.
Since the symptoms of ovarian cancer are subtle and common, most cases are diagnosed late, making the death rate for the disease high. The symptoms include fatigue, bloatedness, abdominal swelling, and changes in bowel or bladder habits.
“Ovarian cancer can affect women throughout their lives, but most women are diagnosed in their perimenopausal years, in their fifties,” said Fagella, who is 57. “Unfortunately, without an early detection test, many of the symptoms of ovarian cancer can be misinterpreted as the beginning of menopause.
“Women think, I’m going through the changes,” she said, “and, believe it or not, so do their doctors.”
This year, there were 22,000 cases of ovarian cases diagnosed and 14,300 deaths from the disease, according to American Cancer Society estimates.
In New Jersey, nearly 800 women are diagnosed with ovarian cancer annually, and more than 500 die from it, according to the state Department of Health and Senior Services.
Early detection is also the focus of a Pennsylvania team of innovators who were awarded $10,000 this year for their work in creating a detection device that can pick up the odor signature of ovarian cancer.
“My lab is working on individual biomarkers for ovarian cancer that you can smell,” explained George Preti, member of the Monell Chemical Senses Center in Philadelphia. “I can’t smell it. But dogs can. We’re working with dogs that have been very excellent at picking these out.”
The hope is that, using nanotechnology, a small chip with thousands of sensors can be produced—a chip with the power of the mammalian olfactory system that can electronically sniff for the presence of ovarian cancer in fluids. Right now, Preti said, the emphasis is on plasma in blood. Later, research will grow to encompass vaginal fluids and sweat.
The dogs being used for the research are from the Penn Vet Working Dog Center, on a campus adjacent to the Monell center. Cynthia Otto, a veterinarian and executive director of the center, brought Ffoster, a Labrador Retriever involved in the project to the event Wednesday. All dogs at the center are named after someone who died in the 9/11 tragedies. Ffoster is named after Sandra N. Foster, who perished at the Pentagon that day.
“Someone said Kaleidoscope of Hope thinks outside of the box. You think outside of the barks,” Otto quipped.
“The dogs detect blood samples. They do not screen humans,” she explained. “The dogs are helping us refine the methodology so that we can have a system that’s available and inexpensive so that women can get screened every single year at minimum cost.”
In discussing his project on so-called synergistic immunotherpay, Goldberg offered a reason for optimism. The immune system, he said, has the capacity to be as adaptive as a tumor that constantly evolves.
“If we can have a medicine that evolves with the tumor,” he said, “we have a much better chance of treating the disease.”
Goldberg said now is the most exciting time ever to be researching because of new technological tools and new understandings of how the body works. Yet inflation-adjusted investment in research from the government is down 25 percent in the last decade.
According to the National Institutes of Health, sequestration required it to cut 5 percent, or $1.55 billion, of its fiscal year 2013 budget, equally across all projects. The result: 640 fewer research project grants were issued.
“Our lab has been fortunate to be sponsored by a number of organizations, but it feels like home to come here to Kaleidoscope of Hope,” Goldberg said. “This is a very strong community, built here in New Jersey. You should be very proud of yourselves because what you’re doing I’ve not seen replicated in other places.”
Kaleidosope of Hope has become a place for people involved in ovarian cancer to go. Researchers come for support. So do the loved ones of those who succumbed to the disease. So do survivors.
Nicole George of Chatham Township, whose mother was diagnosed with ovarian cancer at 56 in 2009 and died in 2011, has worked tirelessly with her family to raise funds for Kaleidoscope. Having raised more than $12,000 this year, she received the Founders’ Award at the event.
Clapping enthusiastically for George was Susan Skrobacz of Howell, a survivor who was diagnosed in August 2012. She found Kaleidoscope when she was being treated at Jersey Shore Medical Center. Some members were helping in the survivor garden there.
Last year, Skrobacz participated in the Kaleidoscope walkathon at Avon.
“At the end I passed the torch to a breast cancer survivor,” Skrobacz said. “It was symbolism, since September is ovarian cancer awareness month and October is breast cancer awareness month.”
A woman’s risk of getting invasive ovarian cancer in her lifetime is one in 73, according to the American Cancer Society. That contrasts to a one in eight lifetime risk for breast cancer.
Skrobacz said she and her husband attended “We Remember, We Celebrate, We Believe” Wednesday because they do everything they can to advance the cause.
Others in the community were drawn to help as well. Congressman Rodney Frelinghuysen (R-Dist. 11) took a break from the campaign trail to unexpectedly drop in at the event. He was a good friend of the late Gail MacNeil of Chatham Township, who founded Kaleidoscope along with Lois Myers and Patricia Stewart-Busso, who are no longer active in the group.
“The people involved with this admirable organization are truly in the ‘hope business,'” Frelinghuysen said. “They understand that as long as they remain in the fight, ovarian cancer cannot shatter the faith nor diminish the courage of women battling this insidious disease.”
Also rallying to support the event were many local restaurants that provided a meal and dessert— Malay in Morristown, Rod’s Steak and Seafood Grille in Morris Township, Nonna’s in Florham Park, MOR Turkish & Mediterranean Cuisine in Madison, and George & Martha’s American Grille in Morristown. Chartwells, the dining service at the College of St. Elizabeth, also contributed.
The whole thing did Fagella’s heart good as she emceed and greeted people. Her ovarian cancer is in stage four.
“I have had this disease, actively, five times,” Fagella said. “I have five inoperable tumors and I have had five surgeries. I have been on chronic chemo for the past two years. People will say, ‘You don’t look sick.’ I tell them, ‘Don’t look under the hood.’
“It’s a highly recurrent disease,” she added. “I’ve been on 10 different chemo drugs. It’s the only way to keep alive.”