AbbVie explores the emotional side of rare chronic blood cancer in video series

When family doctor Brian Koffman found some bumps on the back of his neck, he ran some tests on himself. Everything checked out except his white blood cell count, which was extremely high. Within a week, he was diagnosed with chronic lymphocytic leukemia (CLL), but even as a physician himself, he still had a lot to learn about the rare blood cancer.

Brian Koffman

That’s one of the reasons why he and his wife founded the CLL Society, and why he’s working with AbbVie to make sure new and existing patients can access information, treatment options and quality care.

The AbbVie video series is called “Blood Cancer, Explained,” and Koffman and CLL Society are one of two advocacy partners, along with Lymphoma Research Foundation, to appear in the second episode focused on the emotional ups and downs both patients and caregivers often experience.

CLL is typically a slow-growing cancer, and newly diagnosed patients are often advised to take a wait-and-watch approach. While that may sound more positive than having to quickly start aggressive treatments, the waiting can be difficult, said Ilke Limoncu, director of US oncology public affairs at AbbVie.

Patients find out from their doctors that they have cancer, but then are told to wait for treatment even though they know cancer is growing inside their bodies, she said. Limoncu is the host of the AbbVie series.

Koffman characterized the process as “watch and wait” for the treating physician, but “watch and worry” for the patients.

In exploring the emotional and mental health effects in the latest video, Limoncu references AbbVie’s research last year surveying patients, caregivers and physicians to gauge the toll of CLL. Patients in the study described a “roller coaster” of emotions as they went from diagnosis to treatment to remission and relapse, for some.

Koffman’s cancer, diagnosed 18 years ago, was a rarer aggressive CLL, but he’s also experienced a rollercoaster of emotions as he’s cycled through clinical trials and multiple treatments. Because there weren’t many CLL resources back then, he began blogging, combining his personal and medical experience, and gained a popular following. He and his wife, Patty, launched the CLL Society in 2013 to help educate people about clinical trials and potential drugs, offer support — including helping people without resources to get meetings with expert CLL physicians — do policy advocacy work and fund research.

“I’ve talked about CLL being this major actor in your life, but you’re still the director of the play. You get to decide when that actor walks onto the stage – sometimes that actor will burst – but you get to decide how much they play, what role they play. There’s a whole life outside of CLL and you’ve got to enjoy that too,” he said.

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