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My name is KayEllen and I was diagnosed with ovarian cancer in 2008, and I have taken part in several immunotherapy trials.
I hope to help other women feel more comfortable about researching immunotherapy and taking part in clinical trials.
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“I was much stronger than I thought.”
Everyone needs an advocate sometimes. For KayEllen Gebhart, 61, who was facing stage 3 ovarian cancer, that advocate turned out to be her daughter, Nicole. Nicole helped her mom navigate the often bewildering world of cancer diagnosis and treatment, alerting her to options beyond the standard trio of surgery, chemo, and radiation.
For patients like KayEllen, whose ovarian cancer is diagnosed after it has already metastasized, the main front-line treatment is surgery plus chemotherapy, which is usually effective at achieving remission. The problem is that ovarian cancer has a stubborn habit of coming back—roughly 80% of the time. And when it does come back, it is often resistant to further chemo.
That’s why KayEllen knew she wanted to pursue additional treatment approaches to keep the cancer from returning. “It felt kind of like I was living without a safety net or diving without a parachute,” says KayEllen. “That's when Nicole started looking for other things.
Nicole quickly found herself on the Cancer Research Institute website where she learned about up-and-coming treatments for ovarian cancer, including different types of immunotherapy. Within a few weeks, KayEllen was enrolled in a clinical trial of a therapeutic cancer vaccine.
An Unwelcome Surprise
Ovarian cancer is sometimes called “the cancer that whispers.” It often develops without generating tell-tale symptoms, and for that reason is commonly diagnosed at an advanced stage.
That was the case for KayEllen, who learned she had stage 3 ovarian cancer on her 56th birthday, August 12, 2008.
“I was a classic case of not really too many symptoms, which as we all now know is typical of ovarian cancer,” says KayEllen.
By the time the cancer was discovered, it had spread to surrounding lymph nodes. Not one to waste time, KayEllen made an appointment right away with a surgeon. Three days later, she had surgery to remove the tumor.
The next step in her long cancer journey was an intensive round of chemotherapy, given intraperitoneally—directly into the body cavity surrounding the ovaries. This treatment approach, administered every two weeks, is known for being especially grueling. “I was told constantly that I wouldn't finish it,” says KayEllen. “The more people told me I wouldn't finish it, the more I was determined I was going to finish it. And I did.”
Prior to getting cancer, KayEllen had a habit of avoiding all things medical. “I used to joke with the nurses that I couldn't even watch Scrubs.” But she found that when push came to shove, and her health depended on it, KayEllen was able to summon reserves of power she didn’t know she had. “Suddenly, here I was having shots and pokes and I amazed myself. I was much stronger than I thought.”
Both the surgery and chemo went well and KayEllen was declared to be in remission. But the devoted wife and mother of two didn’t want to take any chances. “Ovarian cancer has one of the higher rates of recurrence and I knew this,” says KayEllen. “It's pretty much a given if you have had anything past stage 2 ovarian cancer.”
Shortly after KayEllen finished her chemo treatment, Nicole went online to find out what else they could do to try to keep the cancer from recurring. As it turned out, there were several options.
Vaccinating Against Cancer
On CRI’s website, Nicole found information about clinical trials being conducted at Roswell Park Medical Center, under the direction of Kunle Odunsi, M.D., Ph.D. Dr. Odunsi is a leader in the field of immunotherapy for ovarian cancer. His area of research is devising therapeutic cancer vaccines that can enlist the immune system in the fight against cancer.
Therapeutic cancer vaccines are similar to regular vaccines, except that the goal is to fight cancer, rather than an infection. Clues that the immune system can fight ovarian cancer come from the observation that the presence of T cells in ovarian tumors is strongly associated with improved survival: the more T cells there are invading the tumor, the better the patient’s prognosis. If there were some way to strengthen this natural immune response, then the prognosis for women with ovarian cancer might be improved.
In order for the immune system to recognize cancer, it has to be able to identify it by a distinguishing marker, or antigen. Research by Dr. Odunsi and others has shown that as many as 40% of ovarian cancer tumors display a unique antigen called NY-ESO-1. This is a protein that is normally made only in the male testes and the placenta. Its specific presence in ovarian tumors, therefore, makes it a potential target for a therapeutic cancer vaccine.
KayEllen enrolled in a clinical trial of a vaccine made of the NY-ESO-1 antigen plus additional chemicals known as adjuvants, which are designed to heighten a developing immune response. In total, KayEllen has done three separate vaccine trials, one at Duke University Medical Center and two at Roswell Park. As of May 2014, she is still in complete remission.
The Best Medicine
Facing cancer has not been easy for KayEllen or her family. The news hit Nicole, KayEllen’s adopted Korean daughter, especially hard. The mother and daughter pair had always been close, but the experience brought them even closer.
“She said, ‘You brought me here and you started my life, so I want to help you with yours,’” KayEllen recalls Nicole saying.
The entire Gebhart family recalls the early days of KayEllen’s diagnosis and treatment as the absolute worst days of their lives. It got a bit easier once KayEllen entered remission. Some of the blow was softened by KayEllen herself, who at one point in life wanted to be a stand-up comedian, and managed to find humor in the most unlikely of places.
“When I first had my diagnosis, I didn't know what to do. I had two days to wait for the surgery, and so we just grabbed old Chevy Chase movies and sat around watching them 24/7,” KayEllen recalls. “I think that those healthy humor or laugh endorphins have helped us get through this.”
There were also unlikely upsides to the frequent trips to Buffalo, NY, to receive treatment at Roswell. “We're from that area originally so it was kind of like going home.” On one recent trip, she and her husband went to Niagara Falls to celebrate their 37th wedding anniversary. “I've always called these trips ‘vacations with needles,’” she says.
Reflecting on what she has been through over the past 7 years, KayEllen is thankful for little things that she is still able to savor. “I'm here to watch my grandson play baseball. I'm here to go out to dinner and celebrate my daughter's arrival date from Korea. I'm here to watch the birds, for Pete's sakes. I'm a cheap date now, let's put it that way.”
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