Tim O’Neill likes to keep moving — whether on his boat, his motorcycle, in his running shoes, or while steering an RV across 47 states. Chronic lymphocytic leukemia (CLL) has failed to stop him from these pursuits, and he’s determined not to let a pandemic do so either.
“I’m more careful these days because of COVID-19, and my condition, but I’m continuing to do what I love,” says O’Neill, 54. “There is just too much to live for.”
Two key factors go into O’Neill’s positive thinking. The first is his confidence in the team helping him. The Center for Chronic Lymphocytic Leukemia at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC), where O’Neill receives his treatment, is one of only a few dedicated CLL centers in the United States. Part of the Center for Hematologic Oncology at DF/BWCC, it features specialists devoted to the disease and laboratory and clinical-based researchers seeking out new, promising therapies like CAR T-cell therapy.
Likewise, O’Neill knows that CLL, a disease of the bone marrow, is incurable. His subtype, one of the most aggressive, has eventually out-tricked each treatment regimen he’s been on since his 2008 diagnosis, resulting in numerous relapses. Since he knows his condition can worsen anytime, he considers each day a precious gift — while remaining optimistic about options in the future.
“Every day I live, the treatment options are expanded,” says O’Neill, whose current regimen includes an investigational daily oral medication at home, supplemented by monthly visits to Dana-Farber as part of a clinical trial. “If it wasn’t for this drug I’m on now, things would be pretty grim. My team at DF/BWCC always has my back.”
Diagnosis and early trials
At one point, O’Neill admits, such optimism was difficult to muster. In 2006, shortly after celebrating his 40th birthday in Ireland with his wife, Kirsten, O’Neill went to the doctor for a nagging swollen lymph node under his jaw. He thought it was Lyme disease; it turned out to be CLL.
Initially O’Neill was treated closer to home at Miriam Hospital in Rhode Island. After his first relapse, in 2011, he went to DF/BWCC, and met with Arnie Freedman, MD, who began consulting on his case.
Eventually, O’Neill transferred all his care to DF/BWCC. There he benefitted from the CLL Center’s clinical trial options including a first-in-human study of ABT-199 (now known as the FDA-approved drug venetoclax), a drug based on science developed in part at Dana-Farber. The trial was led by Matthew Davids, MD, MMSc, now director of Clinical Research for the Lymphoma Program at DF/BWCC, in collaboration with investigators around the world
O’Neill kept moving in other ways as well. While he was in remission on the ABT-199 trial, he and Kirsten ran the Boston Marathon® in 2014 with the Dana-Farber Marathon Challenge team. They also made their cross-country RV journey accompanied by their dog, Happy.
In early 2019, O’Neill’s latest treatment regimen was waning in its effectiveness. Then came yet another option: CAR T-cell therapy, a highly-specialized therapy that involves genetically modifying a patient’s own T cells to attack their cancer. Under the care of Davids, O’Neill was the first patient at the CLL Center to be treated with this new approach.
“Treatment for CLL is generally not curative, and it is discouraging both to patients and their medical team when relapse occurs,” Davids notes, “but patients should know that because we have so many effective therapeutic options, they should still expect to live for many years with CLL — and the longer they live, the more new treatment options are available.”
And despite relapsing after CAR T-cell therapy, living is exactly what O’Neill is doing. He’s now on a clinical trial with a promising new BTK inhibitor drug, communicating with his care team remotely as needed and traveling to DF/BWCC for monthly check-ups.
“Tim is a charismatic guy who has benefitted from our cutting-edge trials,” says Katey Stephans, NP, his DF/BWCC nurse practitioner. “He puts his faith in the people caring for him, and is always grateful.”