I lived to meet my grandchildren.
Meet Bob Levis
“I tell cancer patients there are two things they must do. First, they must go beyond their local oncologist to find doctors who are familiar with the latest research; and second, they must get genetic testing,” says Bob Levis, whose battle with chronic lymphocytic leukemia (CLL) began in 2002.
These are lessons Bob learned throughout his cancer journey. After diagnosis, standard chemotherapy treatments kept his cancer controlled for 10 years…until they didn’t. In 2012, he turned to a comparison drug trial which failed to help; his cancer advanced rapidly and his condition seriously deteriorated.
Bob then became eligible for a CAR T-dosage trial in March 2013 at Penn Medicine with Stephen J. Schuster, MD, and David L. Porter, MD. This life-saving trial was an extension of the groundbreaking success of the 2010 CAR T-cell therapy clinical trial for advanced B cell leukemias and lymphomas led by Alliance for Cancer Gene Therapy Research Fellow and Scientific Advisory Council Member Carl H. June, MD, of the University of Pennsylvania Abramson Cancer Center in Philadelphia, PA.
After receiving CAR T-cell therapy treatment at Penn, Bob experienced an intense cytokine storm – a power struggle within a patient’s body when re-engineered cells strive for dominance over the invading cancer cells. When the storm lifted, a bone marrow biopsy showed no detectable CLL cells. His cancer was in remission.
“Without that CAR T-treatment, I would not be around to see any of my grandchildren,” says Bob. “They motivate me to stay positive and stay fit, which is as important as any treatment.”
Fred and Ivan are the sons of Bob’s older son Adam and his wife Lisa. Stella and June are the daughters of Bob’s younger son Jay and his wife Lauren. Along with Bob’s wife Susan, they provide him with unending encouragement and love.
Today Bob loves to golf and ski and is an avid bicyclist. Whenever the temperatures are above 50 degrees and the winds below 10 miles per hour, he rides one of his favorite off-road courses for seven, 10 or 15 miles roundtrip.
It’s Bob’s positive attitude and unquenchable desire to understand medical options that have propelled his success against CLL. His cancer journey continues, and a few relapses means he is in the hunt for the next solution.
“I know how to dig in, go beyond Google, dive into medical journals and have meaningful conversations with researchers and doctors,” says Bob. “I believe awareness and understanding go a long way. If a doctor tells you ‘we can do this or we can do that,’ it is better to be able to evaluate the options for yourself.”
Bob’s engineering and physics background, as well as his international business experience, prepared him well for navigating the complexities of cancer. “I’m retired now and feel like helping others along their cancer journeys is now my calling,” says Bob who serves on the Board of Directors of the CLL Society, a nonprofit organization that provides patient education, support and research.
“It always feels great when I can help other CLL patients,” says Bob. Over the past 10 years, I’ve received some 30 letters from people I’ve counseled saying thanks for saving my life!”