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/en

00:40 – Introduction to Dr. Joseph Pidala
01:21 – New GVHD Prevention Approaches
02:44 – Why Clinical Trials Matter
03:22 – Challenging Steroid-Based Treatment Norms
06:14 – Timeline for New Treatment Results
07:02 – FDA-Approved Drugs for Chronic GVHD
09:09 – Individualized Treatment Approaches
10:69 – The Role of Patient-Reported Outcomes
13:44 – Symptom Management and Supportive Care
15:20 – Addressing Mental Health in GVHD
17:30 – Inspirational Patient Story
21:12 – Advice for GVHD Patients
23:02 – How to Find Clinical Trials
25:06 – 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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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/yourcancerbestie

Thanks to our Season 19 sponsors, Incyte and Sanofi.

https://incyte.com/

https://www.sanofi.com/en

00:40 – Introduction to Rebecca Heimsoth
01:00 – Diagnosis at Age 33 and Initial Symptoms
02:07 – Preparing for Transplant and Family Separation
04:20 – Emotional Toll and Health Concerns
06:20 – Importance of Physical Therapy and Walking
06:53 – Balancing Flare-Ups, Appointments, and Parenthood
08:20 – Role of Caregivers: Mom and Husband’s Support
09:43 – Kids’ Resilience and Coping with Germ Concerns
11:13 – Creative Ways to Explain Cancer to Children
13:57 – Impact on Friendships and Social Life
16:25 – Finding Online Support Networks and Groups
17:43 – Meeting a Fellow Survivor in Person
21:35 – Advice for Managing GVHD Symptoms
23:16 – Navigating Nutrition with a Busy Family
24:40 – Cognitive Health and Chemo Brain Hacks
27:52 – Life After Transplant: Gratitude, Travel, and Parenting
30:56 – Career Impact and Redefining Success
32:23 – Living for the Milestones and Creating New Goals
32:51 – 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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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.org

Contact Email: [email protected]

Thanks to our Season 19 sponsors, Incyte and Sanofi.

https://incyte.com/

https://www.sanofi.com/en

00:40 - Introduction to Sue Stewart
01:15 - Sue’s AML Diagnosis and Transplant Story
06:33 - Founding BMT InfoNet
10:05 - Life Before the Internet: Lack of Resources
12:43 - Progress in GVHD Treatment
15:25 - Peer Support Through Caring Connections
17:16 - Online Moderated Support Groups
18:58 - Educational Resources on GVHD
21:57 - GVHD Specialist Directory
24:05 - Annual Survivorship Symposium
26:17 - Financial Assistance for Patients
27:39 - GVHD Wall of Hope and National GVHD Day
30:01 - 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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Note: This episodes contains discussion and language of a sexual nature and may not be appropriate for all audiences.

In this episode of Marrow Masters, we sit down with Dr. Christian Nelson, a psychologist at Memorial Sloan Kettering Cancer Center and an expert in psycho-oncology, to address a deeply personal yet often overlooked topic: male sexual dysfunction following cancer treatment. Together, we explore how treatments can impact not only physical function but emotional well-being, identity, and relationships.

We start by acknowledging that sexual dysfunction is one of the most common side effects of cancer treatment, second only to fatigue. Yet, it’s rarely discussed. Dr. Nelson emphasizes the importance of normalizing the conversation and encouraging patients to raise the issue with their treatment teams. He walks us through the emotional toll that erectile dysfunction can take on men, noting how it strikes at the core of masculinity and can lead to increased depression, frustration, and a general sense of brokenness. He stresses that it’s not just about what happens in the bedroom—erectile issues can spill over into all aspects of a man’s life, including his relationship with his partner.

Dr. Nelson outlines a range of treatment options, from well-known medications like Viagra to lesser-known but effective methods like penile injections and implants. He breaks down the fear around these options, especially injections, and highlights how pain levels are often far lower than anticipated. Beyond physical treatments, we discuss the emotional and relational work that’s often required. One key issue is avoidance—men avoiding sexual situations due to performance anxiety, which can snowball into long-term distance and silence between partners. Dr. Nelson makes it clear: the real risk isn’t failure, it’s not trying.

We also dive into how couples can redefine intimacy. Many men associate sex solely with penetration, while their partners often value closeness and emotional connection more. Dr. Nelson advocates for expanding the sexual repertoire and restoring non-sexual forms of affection, which can be just as meaningful. We talk about the impact of testosterone—how its depletion can lower libido and cause men to unknowingly withdraw from their partners—and how testosterone replacement may be a viable option for some, depending on cancer type and treatment history.

As roles shift from caregiver back to partner post-treatment, Dr. Nelson stresses the importance of open communication. He urges couples to work toward understanding each other's perspectives, not convincing each other. He shares an "aha" moment involving a couple who waited five years before seeking help, only to reconnect within three sessions after simply opening the lines of communication. The takeaway: don’t wait.

We close by pointing listeners toward additional resources, including certified sex therapists and specialized urologists, and Dr. Nelson highlights two key professional directories: SSTAR and AASECT. We’re reminded that even the simplest questions—like whether it's okay to kiss your partner—deserve answers. It’s on all of us, both patients and providers, to make room for these conversations.

More:

Episode with Dr. Flores: https://marrowmasters.simplecast.com/episodes/mens-sexual-health-gvhd

Episode with Dr. El Jawahri: https://marrowmasters.simplecast.com/episodes/dr-el-jawahri

SSTAR (Society for Sex Therapy and Research) – https://sstarnet.org

AASECT (American Association of Sexuality Educators, Counselors and Therapists) – https://www.aasect.org

Thanks to our Season 19 sponsors, Incyte and Sanofi.

https://incyte.com/

https://www.sanofi.com/en

00:00 - Introduction to Season 19 and Dr. Christian Nelson  

01:16 - Normalizing Conversations on Sexual Dysfunction  

04:50 - Emotional Toll of Erectile Dysfunction  

07:06 - Treatments: Pills, Injections, and Implants  

09:03 - Avoidance and Anxiety in Sexual Relationships  

12:17 - Expanding the Definition of Intimacy  

16:43 - Role of Testosterone in Sexual Health  

20:05 - Shifting from Caregiver to Partner  

22:17 - Resources and Where to Get Help  

26:29 - A Patient Story: Five Years of Silence  

28:07 - Closing Thoughts and Resources  

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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we speak with Synary Be, a resilient survivor of acute myeloid leukemia (AML), who shares her powerful journey of enduring three bone marrow transplants over eight years. Diagnosed suddenly in March 2017, Synary’s story begins with a high fever that led to a shocking diagnosis: 93% leukemia. From that point on, her life transformed into a series of hospital stays, treatments, and moments that tested her strength and spirit.

We learn how her first transplant involved two umbilical cord donors, one from the U.S. and another from Singapore. When that failed to graft, her younger brother flew from Australia to donate for her second transplant—a 50% match. After two years in remission, she relapsed again and required a third transplant, this time from her older brother, right in the midst of the COVID-19 pandemic. With travel restrictions in place, the donor cells had to be processed remotely and shipped to Stanford, showcasing the remarkable role of medical technology in saving lives.

Despite being given only a 50% chance of survival for her third transplant, Synary put her trust in her doctors. Though she relapsed again, she now maintains remission through chemo pills. With no long-term data available for this new medication, she continues treatment cautiously and with optimism, trusting in the advancement of medicine.

Synary spends some time opening up about the chronic graft-versus-host disease (GVHD) that followed her transplants. She explains its impact on her lungs, eyes, mouth, nails, and skin, detailing both the physical symptoms and the treatments that have helped her reclaim daily life. From scleral lenses to serum tears, to pulmonary rehab and steroid creams, she educates us on the challenges and management of GVHD.

Beyond the physical toll, Synary discusses the mental health struggles tied to long-term illness—particularly anxiety from repeated hospitalizations. She emphasizes the importance of therapy, meditation, support groups, and the courage to seek help. Her words serve as a reminder that managing chronic illness includes caring for both mind and body.

Synary's story wouldn’t be complete without acknowledging her support system. Her husband, who acted as her full-time caregiver through 300 cumulative days of hospitalization, and her three children, endured major sacrifices. Friends and community support filled in the gaps, underscoring that no one should navigate transplant recovery alone.

Even in the face of isolation, fatigue, and anxiety, Synary finds joy in simple pleasures: watching Christmas movies, going for walks, and spending time with family. Her message is clear—life is still good. And GVHD, while challenging, cannot take away her joy.

Calm App — https://www.calm.com

Thanks to our Season 19 sponsors, Incyte and Sanofi.

https://incyte.com/

https://www.sanofi.com/en

00:40 - Introduction to Synary Be
01:20 - AML Diagnosis and First Transplant
03:10 - Transplants and Donor Challenges
04:06 - Relapses and Chemo Maintenance
06:44 - Living with GVHD
12:15 - GVHD Symptoms and Treatments
13:40 - Support System and Caregiving
15:34 - Isolation After Transplants
16:38 - Mental Health & Anxiety
19:03 - Coping and Finding Joy
20:36 - 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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we talk with caregiver Sylvia Chunn of Nashville, who shares her journey alongside her husband David through his diagnosis of AML, a stem cell transplant, and the ongoing challenges of GVHD. Sylvia walks us through their intense timeline, from David’s emergency diagnosis in January 2024 to his transplant in July and their extended stay in Atlanta, away from home and their teenage children, until February 2025. Her husband’s transplant was successful in its purpose, but complications like heart failure and GVHD turned their lives upside down.

We explore the caregiving experience through Sylvia’s eyes, especially navigating chronic GVHD symptoms that affect David’s gut, eyes, mouth, joints, and skin. She explains how their lives are now filled with medical appointments, medications, and managing side effects from treatment. Sylvia describes her role as a blend of cheerleader and drill sergeant, ensuring medications are taken and appointments kept, while also offering emotional support.

Sylvia emphasizes the importance of self-care during the process. With limited financial flexibility, she found peace in simple things like reading through a Facebook book club, daily personal devotions, and leaning on her faith. Exercise helped at times, although maintaining consistency was difficult. She openly shares that she sought mental health support, including therapy and medication, to deal with stress, guilt, and isolation.

The conversation turns to how this journey has affected intimacy and family dynamics. Sylvia candidly reflects on how medical realities changed their physical relationship but ultimately brought them emotionally closer. Time spent together—reading, reminiscing, and watching shows—became a new form of connection. They rediscovered old routines from their early marriage and built a stronger bond through shared trials.

Sylvia also shares how their children, especially their youngest teenage twins and their adult daughter in medical school, responded to the crisis. She notes how her kids matured emotionally, became more empathetic, and stepped up in unexpected ways.

We close with Sylvia offering heartfelt advice to other caregivers: keep showing up, stay grateful, and never forget the power of hope. She reminds us that while this journey is incredibly difficult, it's also filled with unexpected moments of closeness, resilience, and love.

Thanks to our Season 19 sponsors, Incyte and Sanofi.

https://incyte.com/

https://www.sanofi.com/en

00:40 - Introduction to Sylvia Chunn
01:15 - David’s AML Diagnosis and Transplant Decision
02:10 - Living Away from Home for Treatment
03:40 - Navigating Chronic GVHD
05:30 - Caregiver Role and Daily Routine
06:40 - Self-Care and Coping Strategies
08:20 - Mental Health Support for Caregivers
09:40 - Isolation and Infection Risks
11:55 - Impact on Intimacy and Marriage
16:20 - Parenting Through the Crisis
18:40 - Reflections on Family Growth
20:40 - Final Thoughts and Advice to Caregivers

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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Marrow Masters season 19 with a focus on chronic GVHD. There are so many exciting advances regarding C-G-V-H-D taking place. We'll be talking with a variety of speakers this season, who will share their experiences, advice, coping mechanisms, updates, and tips to make this rare disease more manageable.

We will hear from doctors at the forefront of research and treatment, as well as survivors, caregivers, and advocate-leaders in this space.

Season 19 of Marrow Masters will be out on December 18, 2025.

Thanks to our Season 19 sponsors, Incyte and Sanofi.

https://incyte.com/

https://www.sanofi.com/en

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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Given that Season 18 of Marrow Masters focuses on caregiving, we wanted to share an empathy exercise that the LINK's licensed staff social worker, Jennifer Gillette, performed in a recent webinar. It's impossible to know exactly what a cancer patient is going through, but through this exercise, you may get a bit of understanding. And it may help you garner some empathy for the person you are caring for.

This season of Marrow Masters is Sponsored by Sanofi and Jazz Pharmaceuticals.

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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we sit down with Sally Werner, CEO of Cancer Support Community, to explore her dual perspective as a longtime oncology professional and as a caregiver to her mother-in-law. We begin with Sally’s background—first as an oncology nurse, then a healthcare administrator, and now a nonprofit leader. She calls this her “passion job,” driven by a deep commitment to support patients and caregivers alike.

Sally opens up about her personal journey as a caregiver. Her mother-in-law, Patty Jo, was diagnosed with a rare renal cancer, and Sally became an essential part of her care team, despite living in a different city. As a seasoned professional, she brought clinical experience to the table, but she quickly learned that when the patient is someone you love, emotions can cloud objectivity. To manage this, she utilized Cancer Support Community’s own navigation resources to bring a neutral party into the conversation—someone who could help guide medical decisions without the weight of family emotions.

Second opinions played a crucial role in Patty Jo’s care. Sally emphasized how vital they are, especially with rare cancers. In Patty Jo’s case, an aggressive surgical recommendation was replaced with immunotherapy after a second opinion—an option that ultimately preserved her quality of life and kept her active. The family’s concerns were met with clarity and reassurance, thanks to a coordinated, compassionate care approach.

Caregiver support was another focal point. Sally discusses the emotional and physical toll on her father-in-law, who was the primary at-home caregiver. She stresses the importance of helping caregivers maintain their own wellbeing. Sally even moved in for a time to assist with daily tasks and give him a break, showing how essential family coordination and self-care are during intense medical periods.

We also explore how to activate and manage support systems. Sally used Cancer Support Community’s My Lifeline tool to keep extended family informed and to schedule help in ways that respected Patty Jo’s wishes. This helped avoid overwhelming her while still allowing others to contribute meaningfully.

Throughout the conversation, Sally returns to the theme of shared decision-making. She emphasizes that while friends and family often mean well, it’s the patient who should drive treatment choices. Tools like Open to Options allow patients to articulate values and priorities, helping align treatment with what matters most to them.

We end with a look into survivorship—what it means to live well after diagnosis. For Patty Jo, this means gardening, walking, spending time with family, and learning to manage fatigue. It also means embracing life differently and more deliberately. As Sally reminds us, cancer changes everyone. But with support, compassion, and the right tools, families can find strength and even joy on the other side of diagnosis.

This season is sponsored by Sanofi: https://www.sanofi.com/

And Jazz Pharmaceuticals: https://www.jazzpharma.com/

More:

Cancer Support Community: https://www.cancersupportcommunity.org

My Lifeline Tool: https://www.mylifeline.org

Triage Cancer Financial Resources: https://triagecancer.org

nbmtLINK Finance Guide (English): https://www.nbmtlink.org/product/finance-guide-for-bone-marrow-stem-cell-transplant/

nbmtLINK Finance Guide (Spanish): https://www.nbmtlink.org/product/guia-de-financiacion-para-trasplantes-de-medula-osea-celulas-madre/

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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we talk with Deb Brandt, caregiver to her husband, JR, a survivor of Philadelphia-positive acute lymphoblastic leukemia (ALL). Deb shares the journey that began in September 2016 when JR noticed unusual symptoms that led to an urgent diagnosis. Within days, he began an aggressive chemotherapy regimen, with the hope of a bone marrow transplant as the only cure. The search for a match took seven months, eventually expanding internationally until a 10/10 donor was found, leading them to relocate to Stanford University for the procedure.

We discuss the practical realities of caregiving, especially the financial side. Deb emphasizes connecting early with medical teams, social workers, nurse navigators, and financial departments. She details how they tapped into resources from organizations like the Leukemia & Lymphoma Society, utilized a GoFundMe campaign, applied for Social Security disability benefits through its "blue book" criteria, and discovered that many medical bills are negotiable. Deb highlights pharmaceutical assistance programs, including the Medicine Assistance Tool (MAT), NeedyMeds, and Triage Cancer, which help patients access affordable medication.

Deb also shares the importance of proactive communication with insurance providers, especially when facing financial hardship, and leveraging housing support networks such as Ronald McDonald House and Hope Lodge when treatment requires relocation. Don't be afraid to use your personal network, too!

On the emotional side, Deb describes how caregiving is deeply personal, with strategies unique to each person. She and JR found joy in music, storytelling, birdwatching, and creating comforting hospital environments. She underscores the need for caregivers to take their own breaks — whether walks, massages, or naps — and the value of long-term follow-up care, especially when complications like chronic graft-versus-host disease arise.

We explore life after transplant, the strengthening of family bonds, and Deb’s practical lesson of “learning the job” by taking over JR’s household roles. Professionally, Deb works in Montana’s vocational rehabilitation department, helping people with disabilities — including those recovering from cancer — re-enter or adapt to the workforce. She shares that similar resources are available in every U.S. state.

Deb’s closing message is about consciously choosing hope. She encourages caregivers and patients to find daily glimmers of light, allow space for tears, but always return to gratitude and positivity. JR is now eight years post-transplant, living with ongoing health challenges but embodying resilience and determination.

This season is sponsored by Sanofi: https://www.sanofi.com/

And Jazz Pharmaceuticals: https://www.jazzpharma.com/

Check out JR's Survivor Story from Season 14 here: https://marrowmasters.simplecast.com/episodes/jr-brandt

Additional Resources:

Leukemia & Lymphoma Society (LLS) is now Blood Cancer United: https://bloodcancerunited.org/

Be The Match – https://bethematch.org

Medicine Assistance Tool (MAT) – https://medicineassistancetool.org

NeedyMeds – https://www.needymeds.org

Triage Cancer – https://triagecancer.org

Ronald McDonald House Charities – https://rmhc.org

Hope Lodge – https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html

Vocational Rehabilitation Services Directory – Search “[Your State] vocational rehabilitation”

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/nbmtLINK

Follow 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

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.