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MPN Pod: Stories from the Marrow is a podcast about Myeloproliferative Neoplasms (MPNs) and is intended for patients, caregivers, providers, and the greater community impacted by MPNs. Each episode, MPNPod: Stories from the Marrow strives to provide listeners with critical education, the latest…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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