CareCast: The CLL Society Podcast

In this episode of the CLL Society Carecast, we're joined by Ed McNichol — whose career as a deep-sea imaging specialist often takes him out to sea for extended periods. Ed shares his story of navigating life's unpredictable tides — balancing the demanding realities of his profession with the challenges of a CLL diagnosis. While frequently away from home, Ed found stability and empowerment through shared decision-making with his healthcare team and by connecting with CLL Society's support groups, which he fondly describes as a "knowledge sharing community." His journey is one of resilience, adaptability, and the power of staying informed and connected, even when life takes you far from familiar shores. Tune in to hear how Ed continues to chart his course with purpose, community, and hope.

In this episode, we're joined by Henry Olvera, a former firefighter whose life took an unexpected turn after being diagnosed with chronic lymphocytic leukemia (CLL). Throughout his career, he relied on information to save lives, and that same mindset became essential when facing his own diagnosis.

Determined not to let CLL define him, he quickly learned the importance of self-advocacy. He shares how he confronted systemic barriers, researched his options, and pushed to receive the right tests and care. For him, information wasn't just power—it was survival.

Listeners will hear how his firefighting instincts inspired a holistic approach to navigating the physical, emotional, and systemic challenges of living with CLL. His story is one of resilience, empowerment, and courage, offering a reminder that with knowledge and persistence, patients can shape their own path forward.

In this episode, we dive into the powerful journey of Lexii Freitas, a young adult and mother facing CLL. Lexii shares with our moderator and CLL Society staff member, Sarah Castro, the raw reality of receiving a lifechanging diagnosis and how she has learned to navigate it with both courage and determination. She shares her experience with the isolation that can come when friends can't fully relate, and the conscious choice to not let CLL define her identity. Through resilience, self-advocacy, and taking necessary precautions, she's found ways to protect her health while continuing to live fully. Her story highlights the importance of pushing for the right tests, understanding your options, and embracing life's moments despite uncertainty. Lexii's story is a testament to strength, hope, and the power of owning your narrative. Whether you're living with CLL, supporting someone who is, or seeking inspiration, her journey will leave you feeling empowered.

In the first episode of the second season of CareCast: The CLL Society Podcast, our moderator, Doreen Zetterlund, is joined by Rabbi Rebecca Kamil—a chaplain with over 10 years of experience—to discuss the emotional and spiritual challenges faced by CLL/SLL patients throughout their journey. During the conversation, Rabbi Kamil reflects on her own experiences supporting those affected by CLL/SLL.

In this discussion with CLL patient Peter Titlebaum, we explore the connection between lifestyle choices and non-medical approaches to managing chronic lymphocytic leukemia (CLL), with a particular focus on their impact on mental health. Peter is a lifelong athlete, college professor at the University of Dayton, an active member of a CLL Society Support Group, and has been living with CLL since 2018.

Peter reflects on his personal experience, highlighting how physical activity has positively influenced his mental health. He also shares how cultivating the right mindset and building a sense of community have been integral to his emotional well-being throughout his journey with CLL.

Approximately 53 million Americans serve as care partners to a loved one, with about 6 million of them providing care to individuals diagnosed with cancer. Susan Bottega is one of these dedicated care partners, supporting her husband since his diagnosis of chronic lymphocytic leukemia (CLL) in 2010.

She reflects on the emotional impact of the initial diagnosis, the importance of becoming well-informed about CLL as a care partner, and how advocating for her husband has shaped their journey with the disease. Susan also touches on the vital role of mental health and having a strong support system, highlighting her involvement in a CLL Society Support Group where she has both given and received invaluable advice from others navigating similar challenges.

It is estimated that between 75% and 95% of people diagnosed with CLL do not immediately start treatment. Instead, they follow the standard of care approach known as Active Observation, also called Watch and Wait, Watch and Worry, or Active Surveillance. When receiving a diagnosis of cancer, it can be confusing and a source of anxiety to hear that you will not be given treatment right away. This is where the emotional rollercoaster with CLL begins for many patients.

In this episode, Dr. Brian Koffman is joined by guest Rick Conner, who has been on Active Observation since receiving his CLL diagnosis in 2015. Rick discusses the emotions that arose from Watch and Wait and shares advice for fellow patients on how to make the most of this time. He also highlights various resources from CLL Society that have been helpful on his journey.

In this inaugural episode of CLL Society's CareCast Podcast, Executive Director, Carly Harrington is joined by Dr. Brian Koffman, Co-Founder, Chief Medical Officer and Executive Vice President of CLL Society, to discuss his emotional journey with CLL. Dr. Koffman reflects on his initial diagnosis and the impact of having a strong support system and community to help him cope with the emotions he encountered. Listen to Dr. Koffman share insights from his 20-year journey living with CLL, including emotional highs and lows he has experienced, his treatment journey, relapse, and how he has navigated the complex emotions cancer has brought into his life.