Creating a Legacy to Others With CLL: The Filbert’s Story

Creating a Legacy 1Creating a Legacy 2Dave Filbert and his wife, Sandy, were surprised when he was diagnosed with chronic lymphocytic leukemia (CLL) in 1999, but not for the reasons you might expect. Dave’s mother and maternal grandmother both had CLL, so Dave knew CLL could one day affect him. But the women in Dave’s family were not diagnosed until late in life. Dave was diagnosed at age 50—far earlier than the typical CLL patient.

“My mother and grandmother lived with their diagnoses until they passed away for reasons unrelated to CLL. Being diagnosed so young meant a 50/50 chance of a shortened lifespan, depending on the disease’s progression,” he says.

Dave’s oncologist recommended a wait-and-see approach that included regular monitoring of his white blood cell count. At age 62, Dave’s white blood cell count began to elevate steadily. Within a year, the count had doubled. That’s when Dave’s oncologist referred him to John C. Byrd, MD, at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James).

Byrd holds the D. Warren Brown Designated Chair in Leukemia Research and is an international leader in CLL research. He ran tests that Dave had never had before, including genetic tests that zero in on cells that are causing the problem. The result?

“We came away very, very happy,” says Sandy. “Dr. Byrd suggested we continue the wait-and-see approach because Dave was otherwise healthy. He didn’t want to start any chemo treatments unless it became absolutely necessary.”

It was not just Byrd’s good news that satisfied the Filberts. It was the individualized attention and Byrd’s easy demeanor that put them at ease. Sandy describes talking to Byrd is like chatting with a friend in the living room.

Upon learning that CLL ran in Dave’s family, Byrd recommended that Dave’s immediate relatives have blood samples taken routinely and be monitored by their primary care physicians. To date, Dave is the only one in his family living with this disease. Closely monitoring immediate relatives in a family with a history of CLL may provide Byrd with information that can help CLL patients or families in the future.

Today, Dave is on a new drug called IMBRUVICA® (ibrutinib) and has been since this recently FDA approved drug was a nameless drug in a clinical trial. Dave only qualified for this clinical trial after a different clinical trial was unsuccessful in treating his rapidly rising white blood cell count. IMBRUVICA® (ibrutinib) has reduced his count to 11,600, just barely above the normal range, and the drug causes very few side effects. This is a significant improvement since Dave started his journey through the ibrutinib clinical trial with a white blood count of 365,000.

“When sitting down to think about our wills, we wanted to leave something for our close friends and family, and to those charities we feel we owe our gratitude. And, well, we couldn’t be any more grateful than we are to Ohio State and Dr. Byrd. When you see this kind of result, you know they’re doing good things,” says Sandy.

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