Navigating the Emotional Weight of CAR T-Cell Therapy

In this podcast episode, we talk to Liz Muenks, a licensed psychologist and director of the Onco-Psychology Program at the University of Kansas Cancer Center. We discuss the psychosocial and emotional challenges faced by patients undergoing CAR T-cell therapy, a groundbreaking treatment for cancer, and how these experiences affect both patients and caregivers.

Liz explains that patients typically enter CAR T-cell therapy after exhausting other treatment options, which leads to a heavy emotional burden. Many patients feel like they've "failed" previous treatments, a term that Liz finds problematic but acknowledges is often used. The pre-treatment phase is already filled with anxiety, depression, and fear. While some patients approach CAR T with hope and optimism, others carry a deep skepticism based on their past experiences. Liz notes that there are optimists, pessimists, and realists among patients, each bringing a different mindset to this journey.

Liz highlights the societal pressure on cancer patients to maintain a positive attitude, which can add stress. She dispels the myth that a positive mindset is required to beat cancer, emphasizing that embracing all emotions, including fear and worry, is crucial to managing the cancer journey. While uncontrolled anxiety or depression can negatively impact outcomes, Liz reassures that patients can still succeed in their treatment even with emotional ups and downs.

The conversation also touches on the unique side effects of CAR T-cell therapy, which differs from traditional treatments like bone marrow and stem cell transplants. While patients often feel relieved that the chemotherapy before CAR T is less intense, they are faced with neurological risks and the potential for serious side effects like cytokine release syndrome. However, these severe side effects affect a minority of patients.

Caregivers, Liz stresses, play a vital role, especially as CAR T is increasingly being done on an outpatient basis. She advises caregivers to lean on their medical teams for support and never hesitate to ask questions. Caregivers often feel immense pressure, but Liz encourages them to recognize that they are not alone in this journey. Support networks include therapy groups, on line resources such as nbmtLINK.org (and many others) and on-call specialists , all available, offering caregivers support in sharing their burdens and finding reputable resources and guidance.

Finally, Liz discusses the psychological challenges that linger after CAR T-cell therapy, especially the anxiety of cancer recurrence. Many patients struggle to move forward, constantly worrying about how much time they have before the disease returns. While some can compartmentalize these fears, others need ongoing psychological support. Liz also shares stories of patients who were initially hesitant about CAR T due to difficult past treatments but later experienced positive outcomes, reflecting the progress being made in this groundbreaking cancer therapy.

This season is made possible thanks to our sponsors:

Kite, a Gilead company: http://www.kitepharma.com/

and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or [phone].

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