『Marrow Masters』のカバーアート

Marrow Masters

Marrow Masters

著者： The National Bone Marrow Transplant Link
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 This podcast series educates patients, caregivers, and health care professionals regarding important topics as they relate to bone marrow/stem cell transplant and CAR-T Cellular Therapy. Season 19 focuses on thriving despite Chronic Graft vs Host Disease, or cGVHD. Season 18 focuses on the incredible know how needed for caregivers, who make transplantation possible. Season 17 covers AYAs and the unique ways they navigate transplantation and survivorship. Season 16 focuses on GVHD and best tips from health care professionals. Season 15 covers CAR T-Cellular Therapy while Season 14 focuses on the parts of GVHD we don’t often talk about. Season 13, takes a deep dive into many of the side effects survivors and caregivers handle post-transplant. Season 12 answers the critical question of "I'm Home, Now What?" Season 11 covers survivors who are thriving. Season 10 covers Graft Versus Host Disease (GVHD) focusing on hope and inspiration. Season 9 covers incredible tips before, during and after transplant--things folks wish they had known. Season 8 covers All Things Related to Clinical Trials. Seasons 7 and 6 focus on important topics related to Graft Versus Host Disease (GVHD). In earlier seasons, we covered all things survivorship (Season 5), the caregiver perspective (Season 4), the patient perspective (Season 3), busting marrow myths (Season 2), and chronic GVHD (Season 1). With more than 37,000 downloads today, we are so thrilled to offer these podcasts.2019-2026 nbmtLINK 衛生・健康的な生活 身体的病い・疾患
エピソード
  • Chronic GVHD: New Hope, New Treatments with Dr. Joesph Pidala

    Chronic GVHD: New Hope, New Treatments with Dr. Joesph Pidala
    2025/12/18
    In this episode, we sit down with Dr. Joseph Pidala from the Moffitt Cancer Center to discuss chronic graft-versus-host disease (GVHD), a complex condition affecting many stem cell transplant survivors. We focus on the latest prevention strategies, treatment innovations, and the critical role that clinical trials continue to play in advancing care.We begin with promising news around prevention. Dr. Pidala shares data from the BMT CTN 1703 trial, which compared conventional GVHD prevention to a newer approach using post-transplant cyclophosphamide (PTCy). This newer strategy significantly reduced the incidence of both acute and chronic GVHD, signaling a major step forward in preventing this debilitating condition.Despite advancements, many patients still experience chronic GVHD, which drives the need for new treatments. We explore several groundbreaking clinical trials that are rethinking traditional steroid-heavy treatment protocols. One study is testing Rezurock (Belumosudil) as a preemptive treatment during early symptoms, while another is investigating whether Jakafi (Ruxolitinib) can be used as a first-line treatment to reduce steroid reliance. These trials challenge old norms and aim to improve long-term outcomes.We also take a look at the four FDA-approved therapies currently available for steroid-refractory chronic GVHD: Ibrutinib, Jakafi, Rezurock, and the most recent addition, Axatilimab (Niktimvo). These drugs, each with different mechanisms and side effects, give patients and clinicians more flexibility than ever before. We touch on other widely used therapies like ECP (photopheresis), which, while not FDA-approved, remain an important part of care.Patient involvement is a key theme throughout. Dr. Pidala emphasizes that progress would be impossible without those who enroll in clinical trials, sharing inspiring examples of patients who benefited from early access to now-approved drugs. He encourages patients to advocate for themselves and speak up about symptoms, improvements, or quality of life changes. Patient-reported outcomes are becoming standard in trials, offering critical insight into treatment success from the patient's perspective.Dr. Pidala also highlights the importance of addressing GVHD holistically. Beyond core treatments, supportive care—including help with dry eyes, itching, joint mobility, pain, and mental health—is crucial to improving day-to-day life. He stresses that long-term recovery is possible and shares a moving story of a young woman with severe GVHD who, through persistent treatment, regained functionality and returned to a fulfilling life.We close with advice for patients: be proactive, informed, and open to trial participation. And when seeking information on trials, always start by asking your clinical team—they’ll know what’s available and suitable for your specific situation. Above all, Dr. Pidala leaves us with a message of hope—there’s real progress being made, and the future looks brighter than ever.Thanks to our Season 19 sponsors, Incyte and Sanofi.https://incyte.com/https://www.sanofi.com/en00:40 – Introduction to Dr. Joseph Pidala01:21 – New GVHD Prevention Approaches02:44 – Why Clinical Trials Matter03:22 – Challenging Steroid-Based Treatment Norms06:14 – Timeline for New Treatment Results07:02 – FDA-Approved Drugs for Chronic GVHD09:09 – Individualized Treatment Approaches10:69 – The Role of Patient-Reported Outcomes13:44 – Symptom Management and Supportive Care15:20 – Addressing Mental Health in GVHD17:30 – Inspirational Patient Story21:12 – Advice for GVHD Patients23:02 – How to Find Clinical Trials25:06 – Final Thoughts and Message of Hope National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
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    26 分
  • Fighting for the Little Things: Rebecca’s GVHD Journey

    Fighting for the Little Things: Rebecca’s GVHD Journey
    2025/12/18
    In this episode, we speak with Rebecca Heimsoth, a young mother and survivor of myelodysplastic syndrome who underwent a bone marrow transplant in April 2022. Diagnosed shortly after turning 33, Rebecca shares her deeply personal journey of navigating transplant recovery, chronic graft-versus-host disease (GVHD), and parenting two small children. Her story is one of resilience, support, and a constant fight to reclaim her life after cancer.We begin by learning how Rebecca’s transplant process unfolded with the support of her family. Her mother stepped in as her full-time caregiver while she temporarily relocated over an hour away from home for five months, separated from her children. Her youngest sister was a full match donor, which initially reduced concern for GVHD—until lung GVHD symptoms appeared five months post-transplant. This diagnosis triggered new fears, especially around survival, and marked the beginning of her chronic GVHD journey, which later expanded to include fascia involvement. Rebecca explains the physical and emotional toll—early menopause, chronic fatigue, cognitive effects, and mobility challenges.We discuss how she manages flare-ups with physical therapy, walking, stretching, and even cupping. Despite the physical setbacks, Rebecca remains actively involved with her family, thanks to a flexible job, long-term disability support, and a strong support system. Her husband takes on parenting duties when her health dips, and her kids have learned small routines to help protect her from illness, such as wearing masks and showering after school. These steps, while difficult, have helped them all cope as a unit.Rebecca also opens up about the mental health side of survivorship—dealing with PTSD, depression, and a sense of loss over her former self. She credits her psychologist, psychiatrist, and peer support groups as vital tools for managing the psychological weight. Online and in-person GVHD groups have connected her to other young adults navigating similar terrain, helping her feel less alone.Despite not returning to her full-time career, Rebecca is finding meaning in her part-time work and family life. Her goals have shifted—from professional advancement to simply watching her kids grow up. Whether it's family vacations or bedtime snuggles, she cherishes these moments. Her ultimate aim is to be present for her daughter’s high school graduation in 2037. Every step forward, no matter how small, is part of the victory.Want to connect with a Young Adult Survivor Group? Find Kim on Instagram at @YourCancerBestie - http://instagram.com/yourcancerbestieThanks to our Season 19 sponsors, Incyte and Sanofi.https://incyte.com/https://www.sanofi.com/en00:40 – Introduction to Rebecca Heimsoth01:00 – Diagnosis at Age 33 and Initial Symptoms02:07 – Preparing for Transplant and Family Separation04:20 – Emotional Toll and Health Concerns06:20 – Importance of Physical Therapy and Walking06:53 – Balancing Flare-Ups, Appointments, and Parenthood08:20 – Role of Caregivers: Mom and Husband’s Support09:43 – Kids’ Resilience and Coping with Germ Concerns11:13 – Creative Ways to Explain Cancer to Children13:57 – Impact on Friendships and Social Life16:25 – Finding Online Support Networks and Groups17:43 – Meeting a Fellow Survivor in Person21:35 – Advice for Managing GVHD Symptoms23:16 – Navigating Nutrition with a Busy Family24:40 – Cognitive Health and Chemo Brain Hacks27:52 – Life After Transplant: Gratitude, Travel, and Parenting30:56 – Career Impact and Redefining Success32:23 – Living for the Milestones and Creating New Goals32:51 – Final Reflections and Words of Thanks National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
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    34 分
  • Surviving, Thriving, and Leading: Sue Stewart on GVHD and BMT InfoNet

    Surviving, Thriving, and Leading: Sue Stewart on GVHD and BMT InfoNet
    2025/12/18
    In this episode, we sit down with Sue Stewart, a 36-year survivor of acute myeloid leukemia (AML) and the founder of BMT InfoNet. Sue walks us through her transplant journey, beginning with a difficult diagnosis in the late 1980s and the grueling induction chemotherapy that followed. With limited treatment options, she opted for an autologous bone marrow transplant—a relatively new and uncertain procedure at the time. Despite the intense side effects, including confusion and delusions, Sue recovered and slowly rebuilt her life. Her story is one of strength and long-term resilience, shaped by medical challenges and a determination to help others facing similar paths.After surviving her transplant, Sue felt driven to understand her experience and quickly saw the gap in patient-centered information. A high-profile court case involving bone marrow donation misinformation pushed her to act. In response, she started a small newsletter to provide reliable, understandable transplant information. What began with 700 names (pre-Internet) grew rapidly and became BMT InfoNet, an organization that now supports over 20,000 people weekly with resources, educational content, and peer support.We explore how GVHD care has transformed over the decades. Sue outlines progress in diagnostics, treatment options, and the move away from long-term steroid reliance. Her organization has helped shift the focus beyond survival to long-term quality of life, leading to the creation of survivorship clinics and a deeper understanding of transplant-related complications.Sue introduces us to BMT InfoNet’s key programs, including Caring Connections, which matches patients and caregivers with peers based on similar experiences. We also learn about their online, professionally moderated support groups, offered to different patient communities. These groups have been instrumental in helping individuals process their experiences and stay connected.The organization’s educational materials and annual survivorship symposium continue to empower patients to become active members of their care teams. Sue emphasizes the importance of recognizing symptoms early, understanding treatment options, and advocating for proper care—especially for GVHD, which many local doctors may not fully understand.Finally, Sue shares the story of how one patient’s experience with ocular GVHD and scleral lenses led to a wider medical breakthrough. It's a powerful reminder of how patients can change the landscape of care by sharing their stories. BMT InfoNet's mission remains clear: provide support, share knowledge, and give voice to those on the transplant journey.BMT InfoNet: https://www.bmtinfonet.orgContact Email: help@bmtinfonet.orgThanks to our Season 19 sponsors, Incyte and Sanofi.https://incyte.com/https://www.sanofi.com/en00:40 - Introduction to Sue Stewart01:15 - Sue’s AML Diagnosis and Transplant Story06:33 - Founding BMT InfoNet10:05 - Life Before the Internet: Lack of Resources12:43 - Progress in GVHD Treatment15:25 - Peer Support Through Caring Connections17:16 - Online Moderated Support Groups18:58 - Educational Resources on GVHD21:57 - GVHD Specialist Directory24:05 - Annual Survivorship Symposium26:17 - Financial Assistance for Patients27:39 - GVHD Wall of Hope and National GVHD Day30:01 - Final Story: How Patient Experience Changed GVHD Care National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
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    33 分
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