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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

On this episode of the PV Pod, Josh and Kay discuss the critical importance of shared decision making in the treatment of polycythemia vera (PV). They are joined by Dr. Lucia Masarova from MD Anderson Cancer Center and PV patient Cheri Clark, who provide insights from both the physician and patient perspectives. The…

On this episode of the PV Pod, we dive into the experiences of Steven Ames, who shares his journey with polycythemia vera (PV). Diagnosed during the height of COVID-19, Steven discusses the challenges he faced, including difficult interactions with healthcare providers, the importance of seeking second opinions, and…