CareCast: The CLL Society Podcast

Being told you have chronic lymphocytic leukemia (CLL) can come with feelings of worry, sadness, confusion, and perhaps most of all, uncertainty. From diagnosis, to watch and wait, starting treatment, reaching long-term stability and survivorship, to potential relapse and starting over again, the journey can get complicated, and everyone's experience is unique. CLL Society is here to partner with you, and together we can tackle the hard moments and turn them into positive action and hope. CareCast, the CLL Society podcast, explores living with CLL through real-life stories. We will speak with patients, care partners, and loved ones to get an array of perspectives on the impact CLL / SLL has from those closest to it. We invite you to join us - we are all in this together. CLL Society is an inclusive, patient-centric, physician-curated nonprofit organization that addresses the unmet needs of the chronic lymphocytic leukemia and small lymphocytic lymphoma (CLL / SLL) community through patient education, advocacy, support, and research. Learn more and find support at: https://cllsociety.org/

More Than a Diagnosis: Living Fully With CLL

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.

08-21
45:16

Balancing Life, Fitness, and CLL: A Smart Patient's Story

In this inspiring episode of CareCast, lifelong athlete Ashley Montulli joins CLL Society’s Development Director—and fellow CLL patient—Ron Katz for a powerful conversation on navigating life with CLL while balancing motherhood, fitness, and wellness. Ashley shares how staying active and making smart adjustments to her routine have helped her cope with lifestyle changes brought on by her diagnosis. Together, they dive into the importance of having the right information and advocating for yourself as a patient—because Smart Patients Get Smart Care. Don’t miss this motivating look at strength, resilience, and self-empowerment.  

07-25
52:09

Finding Hope Beyond Your Diagnosis

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. 

06-23
39:35

Lifestyle, Mindset, and Community: A Holistic Approach to CLL

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. 

12-17
30:21

Supporting Loved Ones Through CLL: A Care Partner’s Journey

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.

11-19
26:17

Coping with Watch and Wait and the Delay in Starting Treatment for CLL

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. 

10-15
39:14

Our Founder's Emotional 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. 

09-17
43:51

Sneak Peek: Getting into the Treatment Mindset w/Dr. Brian Koffman

Entering treatment for chronic lymphocytic leukemia (CLL) can be an emotional time. In this clip, Dr. Brian Koffman shares the importance of having an optimistic mindset while also setting realistic expectations. The full episode is coming on September 17.

09-03
01:11

Welcome to CareCast

Welcome to CareCast! In this introductory message, Executive Director Carly Harrington invites listeners to our new podcast, CareCast: The CLL Society Podcast. Receiving a diagnosis of chronic lymphocytic leukemia (CLL) can evoke a range of emotions, but here at CLL Society, we want you to know that you never have to face it alone. Throughout the podcast, we will explore living with CLL through real-life stories.   CareCast debuts September 2024.

08-19
00:34

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