Nine months ago, “Big John” Charles Morris puttered around in worn flip-flops and
a cumbersome back brace.
Tying shoes left the survivor of non-small cell lung cancer (NSCLC) out of breath. Besides, he could not find comfortable shoes for his large size 16 feet, even when he spent hundreds of dollars on special shoes designed for people with diabetes.
Now, the power walker strides around Sumter in crisp New Balance sneakers and custom-fit insoles, averaging 6 to 8 miles per day, no back brace needed.
He credits the changes to participating in clinical trials, most recently a 12-week, 26-person pilot research study led by associate nursing professor Karen Kane McDonnell.
McDonnell’s study tested a home-based symptom management program that included walking, meditation and breathing exercises to help survivors of NSCLC better manage symptoms and improve their quality of life.
She designed the study to build on her previous research and collaborated with Dean Jeannette Andrews and Associate Dean for Research Bernardine Pinto, a renowned expert in developing exercise programs for survivors of breast cancer.
Study participants received a manual with detailed information about the breathing exercises and meditations, as well as daily text messages. They also completed a daily activity log, set goals and talked weekly by phone with a member of the research team.
The difference for Morris has been striking. Taking part in the study has improved not only his physical health but also his overall outlook on life.
“This program has helped me to see the beauty in the world,” he explains.
Building a life beyond survival
About 235,000 Americans are diagnosed each year with non-small cell lung cancer, which accounts for nearly 85 percent of all lung cancer diagnoses, according to the American Society of Clinical Oncology. With treatment advances, nearly 25 percent survive five years after diagnosis, including Morris.
But McDonnell says it can be difficult to transition from cancer patient — focused on preventing death — to cancer survivor — focused on managing treatment side effects and learning to live again.
Morris’s chemotherapy caused tooth loss and nerve damage in his feet. When he hesitated to set walking goals because of his foot and shoe problems, McDonnell immediately connected him with a specialty store to be properly fitted for insoles and shoes. She also recommended an inexpensive over-the-counter ointment for his cracked feet and connected him to a lung specialist who has helped improve his sleep.
“She just always went the extra mile for me,” Morris says. “She’s like an angel.”
McDonnell enjoys linking survivors with resources and seeing the positive changes that result. She feels it would be unethical to enroll survivors in studies focusing on physical activity without directing them to resources to help them participate safely.
“It’s hard to do much when you’re in pain or you can’t walk. The simplest strategies can make a huge difference. When you work with people in clinical trials, you really help them.”
Dr. Karen McDonnell
Forging new habits together
McDonnell says lung cancer survivors often feel isolated and stigmatized because the disease is strongly associated with smoking. To strengthen survivors' social connections, she designs and tests partner-based programs.
Each survivor must recruit an adult family member or friend to join the study. Partners encourage and challenge each other throughout the 12 weeks, which helps new behaviors take root and become shared habits.
Howard Helmly jumped at the chance to help Morris, a lifelong friend he saw struggling to manage post-treatment complications and juggle caregiving duties for two elderly parents. But Helmly was shocked when he realized how little he himself moved, some days only a few hundred steps.
He now takes daily walks through his neighborhood, which he credits with loosening his stiff joints and reducing his rheumatoid arthritis attacks. He also has a renewed focus on improving his health and well-being.
The partner perks do not surprise McDonnell. She finds partners often have health challenges because health behaviors tend to be connected within family and social groups.
“Everyone can benefit from physical activity and stress management,” she says.
The next steps for McDonnell and her research team are to analyze the study data and modify the program based on those findings and participant feedback. She will then expand the study to a larger group starting in summer 2021.
* McDonnell is supported by the American Cancer Society under Award MRSG-17-152-01 and the Bristol Myers Squibb Foundation.