MPN Pod: Stories from the Marrow

In this episode of MPN Pod, Kay and Josh sit down with Rachel Suarez, a licensed clinical social worker who specializes in oncology, to discuss the often overlooked emotional and psychological challenges of living with an MPN. Rachel explains what kind of support social workers can offer MPN patients, having worked with many PV and ET patients herself.

She also addresses how patients can advocate for themselves in medical appointments, talk about their diagnosis with family and friends, and take advantage of patient support organizations even when a social worker isn't available at their local treatment center. This episode is a reminder: MPN isn't a sprint, it's a marathon, and no one has to run it alone. Check out piecetogetheret.com and piecetogetherpv.com to learn more.

Episode description will accompany podcast on podcast players.

Transparency Statement:

The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more.

The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

In this episode of MPN Pod: Stories from the Marrow, hosts Josh and Kay speak with entrepreneur and musician Troy Putman about living with essential thrombocythemia, or ET. Troy shares how ET-related fatigue changed his life, including his ability to perform as a drummer and keep up with the active lifestyle he once knew. He also discusses the importance of having a supportive care team, leaning on loved ones, and connecting with others in the MPN community. Through Troy's story, this episode explores the invisible impact of ET and reminds listeners that it's okay to feel scared, ask questions, and seek support.

Check out piecetogetheret.com and piecetogetherpv.com to learn more.

Transparency Statement:

MPN Pod: Stories from the Marrow is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more. The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

On this episode of the MPN Pod, hosts Kay and Josh sit down with Raqueal, a 33-year-old mother of two from Arizona, to hear her journey with essential thrombocythemia (ET), from an unexpected discovery during pregnancy to years of inadequate medical communication and, ultimately, finding a specialist who truly listened. Raqueal shares how the "watch and wait" approach left her without answers, and how she learned to advocate for herself through research, online communities, and the courage to seek a second opinion. She also opens up about the invisible toll of living with ET, including debilitating fatigue, isolation, and the emotional weight of a diagnosis others can't see.

Check out piecetogetheret.com and piecetogetherpv.com to learn more.

Transparency Statement:

The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more.

The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

In this episode of The MPN Pod, hosts Kay and Josh sit down with Dr. Tony Hunter, an MPN specialist and associate professor at Emory University, for a comprehensive ET 101. Dr. Hunter breaks down what essential thrombocythemia is, how it's diagnosed (often incidentally through routine bloodwork) and the driver mutations (JAK2, CALR, MPL) behind the disease. The conversation covers the wide spectrum of ET symptoms, from debilitating fatigue to blood clotting risks, as well as treatment options including aspirin, hydroxyurea, and interferons. Dr. Hunter also emphasizes the importance of shared decision-making, seeking second opinions, and taking an active role in managing a chronic blood cancer.

Check out piecetogetheret.com and piecetogetherpv.com to learn more.

On this episode of the MPN Pod, hosts Kay and Josh welcome back fan-favorite guest Gary Linehan, a 56-year-old educator and avid hiker living with polycythemia vera, for an update on his journey since his Season 1 appearance. Gary shares how a change in treatment in 2022 brought his blood counts to normal, dramatically reducing symptoms like fatigue and burning sensations, while a new focus on diet and exercise through a cardio lifestyle program has further improved his quality of life. Now a school principal, Gary discusses balancing career and health, his upcoming hike of the West Highland Way in Scotland with fellow MPN community members, and offers advice to newly diagnosed patients, including wisdom from Viktor Frankl, encouraging them to consult experts, find meaning in their challenges, and never let cancer define who they are.

Check out piecetogetherpv.com and piecetogetheret.com to learn more.

Episode description will accompany podcast on podcast players.

Transparency Statement:

The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more.

The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

In this season three premiere of the MPN Pod: Stories from the Marrow, hosts Kay Vermeil and Josh Bragg interview Dr. Tyler Parsons, a postdoctoral researcher at Washington University who studies myeloproliferative neoplasms (MPNs) and is himself a polycythemia vera (PV) patient. Tyler shares his decade-long journey to diagnosis, beginning with his first deep vein thrombosis at age 17 and experiencing multiple blood clots throughout college and graduate school before finally being diagnosed with PV during his PhD program. Despite the challenges of managing a rare blood cancer while pursuing his doctorate, Tyler offers valuable insights on finding your "new center" after diagnosis, staying informed about your condition, and maintaining your goals and ambitions while adapting to life with PV.

Episode description will accompany podcast on podcast players.

Transparency Statement:

The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more.

The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

The Season 2 finale of The PV Pod: Stories from the Marrow takes listeners through a thoughtful year-end review, highlighting the most impactful insights shared by patients, caregivers, clinicians, and advocates. Kay and Josh revisit key themes like early symptoms, shared decision-making, and the power of self-advocacy, drawing on memorable moments from this year's guests. The episode also explores the importance of education, community support, and finding credible resources while navigating life with PV. Plus, the hosts offer a sneak peek at what's ahead in 2026.

Transparency Statement:

The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more.

The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

On this episode of the PV Pod: Stories from the Marrow, Kay and Josh welcome Tracy Rode, CEO of the Patient Empowerment Network and a 15-year cancer survivor. Tracy shares her insights on self-advocacy, the importance of credible information, and how to navigate the challenges of living with a rare cancer like polycythemia vera. Listeners will learn practical tips for preparing for doctor appointments, finding support, and empowering themselves throughout their PV journey.

Transparency Statement:

The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more.

The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

On this episode of the PV Pod: Stories from the Marrow, hosts Kay and Josh are joined by Dr. Al Freedman, a psychologist and rare disease advocate, to discuss the mental health challenges faced by people living with polycythemia vera (PV) and other rare diseases. Dr. Freedman shares his personal story as a parent and professional, offering insights on coping with uncertainty, isolation, and the importance of community support. The conversation highlights practical strategies for managing mental health, both for patients and caregivers, and emphasizes the value of hope, resilience, and connection. Tune in for an honest and compassionate look at navigating life with a rare disease.

Episode description will accompany podcast on podcast players.

Transparency Statement:

The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more.

The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

On this episode of the PV Pod, hosts Kay and Josh discuss the importance of self-advocacy for those living with polycythemia vera (PV). They speak with Susan Brooks about her diagnosis journey, her experiences with advocating for her own health, and the value of staying informed and connected within the PV community.

Transparency Statement:

The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more.

The following PharmaEssentia-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.