June 23, 2016 | by Stephanie Smith
AJ Patel sits on a bench, basking in warm sunlight, contemplating the cool breeze whistling past him. He is quiet, breathing in the smell of spring — not thinking about the tumor lodged in his left lung. “I just live in this moment,” said AJ. “I find a lot of peace in living my life this way. I feel a lot more normal.”
A few years ago, before he was diagnosed with Stage 4 lung cancer, normal included a fear of cancer so pronounced that when AJ heard someone had it, he would shrink away. “I was so afraid of the word because everything I knew about the word equals death,” he said. “When someone said to me, ‘Oh do you know so and so has cancer,’ I’d say ‘I’m really sorry,’ and I’d turn around and walk away because I didn’t want to address that beast.”
He found himself facing that “beast” in 2013 when, after two years of nagging symptoms — a ragged hissing sound while breathing and, later, coughing up blood-tinged spit — a doctor found a tumor in his left lung. A CT scan taken later was worse: The growth was six centimeters wide and his right lung was pocked with tumors. “I was totally dazed and stunned,” said AJ, who was 47 when he got the news. “I’ve never cried so much or felt so lost in the world.”
Diagnosis: Stage 4 lung cancer
Weeks later, after researching his options for care, AJ found himself seated in the office of City of Hope oncologist Karen Reckamp, M.D., co-director of the Lung and Thoracic Oncology Program. After evaluating his case, Reckamp suggested a brain scan to determine if his tumors had spread. A few days later, she delivered sobering news: The scan had found two large tumors in his brain.
“If you’ve ever had a car accident — that sound and the crunching of metal — it’s almost like an out of body experience. You’re shaking, you’re confused. I felt those symptoms magnified a million times,” said Patel. “‘What’s caused this? Why me?’ It’s just an extremely horrible experience that wrenches your stomach to its very core.”
By this time, only a few weeks since his diagnosis, AJ had been through a range of emotions — from shock at being a healthy nonsmoker diagnosed with lung cancer, to despair when he learned it had spread, to the hollow, lonely sense that he should end his life. It would take time, reassurance from his family and counseling for AJ to emerge and face his new life fighting cancer.
‘A new story for lung cancer’
In the fall of 2013, AJ had surgery to remove the tumors in his brain. During that operation, doctors took a tiny swatch of tumor tissue to have it analyzed genetically. Reckamp and her team were looking for a genetic change — a specific abnormality at the heart of a cancer cell that causes it to grow uncontrolled.
The results of his genetic test were the first glint of hope after weeks of aching sadness: AJ had an alteration called ROS-1. With lung cancer, this means the prospect of targeted therapy — a way of using medications to tame tumor growth. “We have targeted therapy in the form of pills that can stop that tumor growth and in some, this control of the cancer can last for years,” said Reckamp. “The presence of a ROS-1 fusion dramatically changes the prognosis for a patient with lung cancer.”
ROS-1, a gene whose home is in the membrane of a cell, plays an important role in its growth. When it is expressed normally, the ROS-1 gene produces a protein that keeps cells in check — basically, keeps them from overproducing. When something goes wrong with this gene, it can lead to uncontrolled cell growth — and later, cancer. The genetic alteration is found in only 1 percent of cases of nonsmall cell lung cancer and is more common among younger patients and nonsmokers.
“Many types of lung cancers have genetic changes that occur within the tumor that cause the cancer to grow,” said Reckamp. “We have specific targeted therapies for some of these genetic changes that patients can take instead of conventional chemotherapy to block the cancer growth.
“That’s a new story for lung cancer.”
Having the genetic alteration meant AJ could get treatment that blocked the activity of ROS-1 with what was then an experimental drug called crizotinib (Xalkori). He started treatment in January of 2014 and, by the summer, his tumors had shrunk dramatically. “My six centimeter mass went down to less than one,” said AJ. “Today at age of 50 I’m living a phenomenal life. These last three years, believe it or not, have been the best years of my life, contrary to what I thought.”
That life includes cancer that is controlled and a new perspective that is less about possession — of big homes, money, cars and even people — and more about the moment.
“I’m not worried about tomorrow, seeing a doctor and wondering what my scan is because, if I am, it will steal the beauty of today from me,” he said. “This was a very hard lesson — a disease that I was so afraid of ... cowered away from. Now I’m so much braver about it.”
Cancer went from a word that shook AJ to his core to one that taught him to cope.
Learn more about City of Hope's Lung Cancer and Thoracic Oncology Program. If you are looking for a second opinion or consultation about your treatment, request an appointment online or contact us at 800-826-HOPE. Please visit Making Your First Appointment for more information.