Lung Cancer Drug Helps Young Woman With Neuroblastoma
Update: This story was originally posted in January 2010. Anna O'Connor bravely fought neuroblastoma until her death on February 29, 2012. We extend our deepest sympathies to the O'Connor family.
At age 17, Anna O’Connor approached her diagnosis like most people approach a graduate school thesis project. There would be one year of intense treatment, and then she should be fine, doctors at another hospital told her. "I guess I was just like, whatever, I can do it. It’s only one year," she said.
Neuroblastoma is one of the most common tumors among toddlers, but significantly less common in people O’Connor’s age. It typically originates in the adrenal gland above the kidney but can arise in any part of the sympathetic nervous system, the part of the nervous system outside the brain. Symptoms can include bone pain, inability to move a body part, and lumps in the abdomen, neck or chest.
Because of her initial chemotherapy treatments in 2002, O’Connor missed her senior year of high school and lost 40 pounds. She went to prom, but wore a wig. "It was hard to be so different from everyone else and have everyone else be excited about the future and going to college. I was just trying to get through the day," she said.
The survival rate for teens and young adults diagnosed with neuroblastoma is around 10 percent. But seven years later, after undergoing multiple clinical trials, chemotherapy and radiation, O’Connor, now 24 years old, feels blessed to be alive. Her disease has now stabilized because of a new clinical trial she started in May 2009 at the University of Chicago -- a trial for adults with refractory lung, colon, and pancreatic cancer.
O’Connor, from Wheaton, Ill., first turned to the University of Chicago Medicine two years ago, after treatments at other hospitals in Chicago, New York City, and Philadelphia failed to halt the progression of her disease.
At the University of Chicago, she met pediatric oncologist and neuroblastoma researcher Sam Volchenboum, MD, PhD. "I was really surprised how wonderful she looked," Volchenboum said. "Her scans showed an incredible amount of disease."
Despite her scans, O’Connor stayed positive. She founded Anna’s Hope, a nonprofit organization aimed at raising funds for neuroblastoma research. In July 2009, she organized Annapalooza, an event that drew more than 900 people to Community Fellowship Church in West Chicago. The event raised $27,000 for neuroblastoma research.
She also keeps in touch with about 10 other young-adult neuroblastoma patients. They discuss treatments, side effects, and the social implications that come with decreased energy and increased time in hospitals. "You don’t know how to plan your future; no one understands. It’s the same themes with everyone," O’Connor said.
At the University of Chicago, O’Connor was initially placed on a clinical trial but had some serious side effects from the medications. Because of the dwindling number of options left for Anna, Volchenboum began to feel at a loss of what to do next.
Yet, finding answers is what drew Volchenboum to neuroblastoma research. Early on in his residency, he met several teenage and young-adult neuroblastoma patients, "and I was so amazed by their positive outlook," he said. "From a research standpoint, it is a fascinating problem: How can such a similarly appearing tumor be curable in infants while being nearly always fatal in young adults?"
For O’Connor, time was running short. "We have very little insight as to why kids develop this cancer. There doesn’t appear to be any environmental association, and we usually just tell families that it is bad luck," Volchenboum said. But how do you treat bad luck?
In 2008, three research groups -- in France, Philadelphia and Boston -- nearly simultaneously linked some neuroblastoma cases to a mutation of the ALK gene, which was already implicated in other tumors. Volchenboum said the mutation, "may lead to tumors by allowing cells to escape from their normal life cycle and therefore allowing them to grow and spread."
Fortunately, the University of Chicago Medicine was starting a new clinical trial for patients with lung cancer and other solid tumors. The drug under observation blocks signals from the ALK gene’s mutated protein that tell the tumor cells to reproduce. If O’Connor’s biopsy proved she had the mutation, as Volchenboum hoped, she could join the trial.
But O’Connor refused to get her hopes up. "Basically it was like, here’s another one," she said of the trial. Scans up to that point had shown O’Connor’s cancer progressively worsening. But then her results came back: Her mutation matched. She could start the lung cancer drug trial.
Now, nine months later, O’Connor is in a different place than she has been in years. "This has been the first drug that’s helped my cancer get better."
O’Connor attributes her motivation to family and faith. "Seven years later, it’s just amazing that I’ve lived through it."
To learn more about O’Connor and her fundraising and outreach efforts, visit the Anna’s Hope website at www.annashope.com.