MPN Pod: Stories from the Marrow

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...

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 spectru...

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 die...

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 experien...

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 explore...

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 appointm...

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 im...

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...

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 discussion highlights the essential role of patient advocacy, continual education,...

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 the critical role of having a knowledgeable healthcare team. The conversation also...

On this episode of the PV Pod, hosts Josh and Kay engage in a detailed discussion with Dr. Solly Chedid about managing polycythemia vera (PV) over the long term. They explore symptoms, diagnosis, and treatment options for PV, highlighting the importance of patient-doctor collaboration in crafting effective management plans. Don't miss this insightful conversation filled with practical advice and p...

On the Season 2 premiere of the PV Pod: Stories from the Marrow, hosts Kay Vermeil and Josh Bragg introduce Dana, a therapist diagnosed with polycythemia vera (PV) at 35. Dana shares her unique diagnosis story, her experience managing PV symptoms from a young age, and the importance of self-advocacy, mental health, and community support in her journey. Dana offers insightful advice on navigating l...

On the final episode of Season 1 of The PV Pod, we're in conversation with Ken Stein, a 77-year-old former pilot diagnosed with polycythemia vera (PV). Ken shares his diagnosis story, the impact of PV on his life, and the importance of community and self-advocacy. He also highlights challenges in communicating the severity of his condition to others and managing his healthcare team.  Transparency...

On this episode, Josh and Kay recap the first year of 'The PV Pod: Stories from the Marrow', reflecting on key moments from their ten episodes. They discuss polycythemia vera (PV), including insights from medical experts like Dr. Bose, Dr. Tremblay, and Dr. Gerds, and heartwarming stories from people living with PV, such as Nick Napolitano and Gary Linehan. The episode covers PV symptoms, treatmen...

On this episode of PV Pod: Stories from the Marrow, we welcome special guest Dr. Brandi Reeves. She helps us dive into an encyclopedic exploration of polycythemia vera (PV). They break down complex medical terms and concepts related to PV, including JAK2 mutations, allele burdens, molecular response, and more. Dr. Reeves provides clear and concise definitions, making it easier for listeners to und...

We're back with Gary Linehan, an avid hiker living with polycythemia vera (PV) to talk about his incredible hike around Mont Blanc. Gary shares his journey, the challenges he faced, and the heartwarming connections he made along the way, emphasizing the importance of living life to the fullest despite a PV diagnosis. Tune in to hear Gary's wisdom, inspiring stories, and how he continues to thrive...

On this episode, Gary Linehan, an experienced educator and avid hiker, shares his profound journey from being diagnosed with polycythemia vera (PV) in 2021 to embarking on ambitious hiking adventures, including the Tour Mont Blanc. Linehan discusses his initial symptoms, the challenges of misdiagnosis, and the crucial support system that includes his wife, children, and friends. He also shares ins...

On this episode, Dr. Douglas Tremblay from Mount Sinai School of Medicine in New York City discusses progression in polycythemia vera (PV). He elaborates on the transformation of PV into other diseases such as myelofibrosis and acute myeloid leukemia (AML), different ways progression can be defined, and the factors that contribute to the risk of progression. Dr. Tremblay also addresses the signifi...

On this episode, we travel back to our previous episodes to deliver some highlights of what we've learned so far. Dr. Prithviraj Bose gives us an overview of polycythemia vera, patient Nick Napolitano discusses his diagnosis, husband and wife team Joe and Patty Monteleone discuss the caregiver/patient relationship, David Wallace talks about his inspiration to create the PV Reporter and Dr. Aaron G...

On this episode, we hear from Aaron Gerds, MD of the Cleveland Clinic about what to expect when starting treatment for polycythemia vera. He talks about setting treatment goals, monitoring treatment progress, how to have an open conversation with your doctor, and more on this episode of the PV Pod.   Transparency Statement : The PV Cancer Podcast is produced by Believe Limited and made possible by...

Our guest on this episode is David Wallace, founder of The PV Reporter . Diagnosed with polycythemia vera in 2009, David created this website as an MPN (myeloproliferative neoplasm) resource hub and a way to give back to the community.  Transparency Statement: The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. Visit PharmaEssentia.com to learn more. The follo...

On this episode, we're in conversation with a husband and wife team of Joe and Patty Monteleone. Patty has PV and Joe is her supportive caregiver. We'll hear about diagnosis both from a patient and supportive caregiver perspective as well as the unique challenges they have experienced. Transparency Statement: The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia....

On this episode, we talk with Nick Napolitano who has polycythemia vera. He talks about his diagnosis, the emotional impact of being diagnosed with PV and some tips on how to deal with this disease. 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...

What exactly is polycythemia vera? What are the symptoms? How is it diagnosed? How is it treated? What happens if you don't treat it? On this episode we speak with Prithviraj Bose, MD. He talks about working in polycythemia vera, the foundational science, best practices and other "need to knows" of PV.  Transparency Statement: The PV Cancer Podcast is produced by Believe Limited and made possible...

The PV Pod: Stories from the Marrow is a podcast about Polycythemia Vera (PV) and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PV. Each episode, The PV Pod: Stories from the Marrowstrives to provide listeners with critical education, the latest scientific updates, and voices from the community. Join us soon for the season premiere of The...