In this episode, we welcome Jeannie Wiarda, LMSW, a Medical Social Worker at the Adult Blood and Bone Marrow Transplant Center at Corewell Health in Grand Rapids, Michigan. Jeannie has been a Medical Social Worker at Corewell Health for 20 years including 14 years in Hospice and Palliative Care Inpatient; time in the Emergency Room prior to that, and has currently spent three years in bone marrow transplant. Jeannie provides insight into her work with transplant patients, particularly those navigating chronic graft-versus-host disease (GVHD), offering a comprehensive view of her role and strategies for supporting survivors through their journeys.

Jeannie explains that her role as a social worker encompasses the entire transplant process—from the pre-transplant evaluation to post-transplant care. She helps patients address barriers like financial challenges, housing, and psychological trauma, tailoring support to each individual’s unique needs. Her involvement extends through the hospital stay and into recovery, offering continuity of care during this vulnerable time.

A key theme is the interplay between stress, trauma, and the transplant experience. Jeannie highlights the impact of chronic stress on the brain, emphasizing the importance of caregivers who provide practical and emotional support. She underscores the necessity of self-care for caregivers, advocating for planned respite and support systems to sustain their well-being.

Jeannie shares actionable strategies for patients and caregivers to find hope and purpose amid the challenges of GVHD. These include maintaining a healthy lifestyle, engaging in fulfilling activities, and staying connected with others. She stresses the value of education, encouraging patients to leverage resources like the nbmtLINK, BMT InfoNet, LLS, and the GVHD Alliance to empower themselves with knowledge and advocacy skills.

Jeannie emphasizes finding ways to “live life” despite the limitations GVHD may impose. She recalls stories of patients adapting activities to their current abilities, referencing another podcast by the LINK where we talked to a survivor who switched to an e-bike for outdoor exploration. Jeannie also advocates for fostering connections through support groups and meaningful activities, such as volunteering, to regain a sense of purpose.

Jeannie concludes with advice on processing grief and fear, embracing compassion, and accessing professional mental health resources, including cognitive behavioral therapy such as Eye Movement Desensitization and Reprocessing (EMDR), for addressing trauma. Her compassionate, holistic approach demonstrates the profound impact of social work in transforming survivorship into a journey of resilience and empowerment.

More:

• GVHD Alliance: https://www.gvhdalliance.org
• Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
• Book: The Body Keeps the Score: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748
• Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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

In this episode, we sit down with Sarah Bugen, a nurse at Memorial Sloan Kettering Cancer Center, who shares her expertise on managing life after a blood or bone marrow transplant, particularly in relation to chronic graft-versus-host disease (GVHD). The conversation centers on practical advice for patients and caregivers navigating recovery and maintaining quality of life.

Regarding Oral GVHD, Sarah emphasizes the importance of oral health post-transplant, recommending soft toothbrushes, alcohol-free mouthwash, and avoiding irritants like spicy or acidic foods. She suggests soft, hydrating foods and stresses the need for regular dental checkups with oncologist approval. Hydration is vital for managing dry mouth, with a goal of 2-3 liters of fluids daily. Also, sugarless candy or gum can help stimulate saliva production.

For nutrition, Sarah advises increasing caloric intake with protein powders, full-fat products, and small, frequent meals. She also highlights the value of bland diets and electrolyte packets for hydration. Avoiding triggers like dairy, caffeine, and greasy foods can minimize gastrointestinal discomfort (and even GVHD of the GI Tract), while clean cooking practices ensure safety during recovery.

Skin care is another focus. Sarah recommends fragrance-free, gentle products like CeraVe and Cetaphil and suggests applying moisturizer after a shower to lock in hydration. Sunscreen, protective clothing, and sun hats are essential, even in winter, to protect sensitive post-transplant skin.

Physical activity is vital for rebuilding strength and improving mental health. Sarah advises patients to start slow with light activities like walking or stretching and gradually increase as tolerated. Physical therapy exercises should be integrated into daily routines, and adequate rest is crucial after any activity. Even though it may be counter-intuitive, continuous movement is key in the battle against fatigue.

Caregivers also play a pivotal role. Sarah underscores the importance of open communication with the medical team and notes that caregivers can support medication management, track progress, and join support groups for additional resources. Caregivers are encouraged to celebrate small victories and take care of their own mental health, as they are an essential part of the recovery process.

Finally, Sarah shares an incredible survivor story, and reflects on the resilience in her patients and the importance of celebrating milestones like “transplant birthdays.” She encourages patients to set realistic goals, maintain hope, and focus on incremental progress. Sarah leaves us with an inspiring reminder to be patient with ourselves, celebrate every achievement, and never stop fighting.

Resources:

Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition

GVHD Alliance: https://www.gvhdalliance.org

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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

In this episode, we meet up with Josh Conklin, a seasoned bone marrow transplant (BMT) nurse at the University of Michigan Hospital, to explore his experiences, insights, and tips for managing chronic graft-versus-host disease (GVHD). With 11 years of inpatient experience, Josh offers a comprehensive view of the challenges and triumphs in caring for patients undergoing BMT.

Josh explains that his primary role involves guiding patients through the most critical stages of their transplant journey, from chemotherapy conditioning to the stem cell infusion and the vulnerable recovery period afterward. He emphasizes the delicate balance required in managing GVHD, a condition that plays a dual role: while some GvHD is beneficial in suppressing cancer recurrence (graft-versus-leukemia effect), too much can lead to severe complications.

Long-term immunosuppression is a cornerstone of GVHD management. Josh highlights the reliance on drugs like tacrolimus and, when necessary, steroids. However, we note the adverse effects of prolonged steroid use, such as muscle wasting, infections, and physical deconditioning. Emerging monoclonal antibody therapies are offering new hope, aiming to reduce these side effects.

The discussion also sheds light on the psychological toll of repeated hospitalizations and the role caregivers play in patient success. Josh describes caregivers as essential for monitoring symptoms, administering medications, and providing emotional support. However, he acknowledges the significant strain caregiving can impose, especially during the critical first 100 days post-transplant when patients are highly vulnerable.

Josh shares stories of resilience and purpose among his patients, underscoring the importance of a positive outlook and having something meaningful to strive for. He reflects on the impact of a strong support system, whether it’s family, friends, or peer mentorship programs, in helping patients navigate their “new normal.” Despite the challenges, Josh finds inspiration in his patients' ability to find joy and purpose, even in difficult circumstances. He shares his experience with one woman in particular.

This heartfelt conversation highlights the physical, emotional, and relational dynamics of BMT care, offering a glimpse into the profound impact of dedicated healthcare professionals like Josh.

More:

• GVHD Alliance: https://www.gvhdalliance.org
• Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
• Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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

In this episode, we talk to Carly Cappozzo, a senior occupational therapist specializing in graft-versus-host disease (GVHD) rehabilitation at a major cancer hospital. Carly shares her unique approach to patient care, emphasizing the importance of holistic and personalized therapy that empowers patients to regain their independence and identity post-treatment.

Carly explains her role as an occupational therapist, detailing how she helps patients achieve independence in everyday tasks and rediscover activities that give their lives meaning. Her methods include activity analysis, breaking down tasks to identify barriers, and creating strategies to overcome them. She highlights the need for patient-centered care, ensuring therapy aligns with each individual’s goals and preferences.

Carly discusses her work in GVHD rehabilitation, particularly focusing on the relationship between skin, fascia, muscle tightness, and the nervous system. She underscores the value of gentle, prolonged stretching and calming the nervous system to improve mobility and reduce stress. She also addresses cancer-related fatigue, comparing it to a depleted energy "bank account," and stresses the importance of prioritizing activities that bring joy while conserving energy for essential tasks.

Practical solutions for ocular GVHD are explored, including leveraging technology’s accessibility features like text magnification and screen readers. Carly advises tailoring daily routines to maximize engagement in meaningful activities and adapting tasks to accommodate physical limitations. She highlights the importance of movement over exercise, recommending gentle, natural activity to improve well-being.

Carly emphasizes the critical role of caregivers in fostering patient independence. She advises caregivers to balance support with opportunities for patients to contribute to daily life, thus maintaining a sense of purpose. Carly also shares inspiring stories of patients overcoming significant physical and emotional challenges through therapy, demonstrating resilience and achieving a fulfilling quality of life.

The conversation concludes with advice for survivors and caregivers to approach GVHD recovery as a marathon rather than a sprint, emphasizing patience, consistency, and a collaborative approach to health and wellness.

More:

• Seeing AI App: https://www.microsoft.com/en-us/ai/seeing-ai
• GVHD Alliance: https://www.gvhdalliance.org
• Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
• Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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

In this episode, we sit down with Lisa Stewart, a nurse practitioner with more than 25 years of transplant nursing experience, currently working at the post-transplant BMT clinic at the Dana-Farber Brigham Cancer Center in Boston. Lisa provides invaluable insights into managing chronic and acute graft-versus-host disease (GVHD) and shares her expertise, stories, and advice for patients and caregivers navigating post-transplant life.

Lisa describes her role in outpatient care, where the majority of her work focuses on managing chronic GVHD, a condition that is both a sign of a functioning immune system and a complex challenge. While mild GVHD can indicate that the transplant is effectively fighting diseases like leukemia or lymphoma, severe cases can lead to complications involving multiple organs. Lisa outlines the two major categories of GVHD: steroid-reactive and steroid-refractory, with the latter being particularly difficult to treat. Acute GVHD typically occurs within the first 100 days post-transplant and often impacts the skin, liver, or gut, whereas chronic GVHD can develop months or years later and affect a broader range of organs, including the eyes, mouth, lungs, and reproductive systems.

Clinical trials have led to significant advancements in treatment, including drugs like Ruxolitinib and Rezurock, offering hope to patients who fail first-line steroid therapy. Lisa also highlights Axatilimab, a newer medication discussed at the 2023 ASH meeting, although its availability remains limited due to manufacturing challenges. Despite these breakthroughs, steroids remain the frontline treatment, though they often cause challenging side effects like hyperglycemia, insomnia, and weight gain.

Lisa also emphasizes the critical role caregivers play in a patient’s recovery, managing complex medication regimens and providing vital emotional and physical support. She notes that without strong support at home, a transplant may not be feasible, particularly in the crucial first six months post-transplant.

The episode also touches on common post-transplant issues like oral GVHD, fatigue, and the importance of staying active. Lisa shares practical tips, such as using Dexamethasone rinses for oral GVHD and encouraging light activity to combat fatigue. She underscores the importance of early symptom reporting, especially for chronic GVHD, as prompt intervention can significantly improve outcomes.

Lisa concludes with a heartfelt story of a young patient who faced severe complications, including acute respiratory failure and paralysis, but ultimately made a remarkable recovery, even regaining mobility and starting a family. Stories like his, Lisa says, are what keep healthcare providers inspired despite the challenges.

We wrap up with a reminder about the resources available to patients and caregivers, encouraging early reporting of symptoms and proactive management. Lisa’s wisdom and dedication shine through, offering hope and practical guidance for those navigating the complex world of post-transplant care.

More:

• GVHD Alliance: https://www.gvhdalliance.org
• Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
• Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/

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

Season 16 of Marrow Masters, Sponsored by Sanofi, will be released January 30, 2025. The National Bone Marrow Transplant Link, established in 1992, strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow transplant, from diagnosis through survivorship. Season 16 of our show will focus on the best tips for dealing with Chronic GVHD. Top notch health care professionals will share their compassion, best advice, insight and caregiving tips regarding chronic GVHD. This season will offer education, tried and true solutions, stories of hope and more.

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

In this episode of Marrow Masters, we hear the journey of married couple Dave and Laurie Brock, as they share their experience with CAR T-cell therapy— one Dave very recently underwent. The Brocks provide an inspiring and honest account of navigating this complex treatment process. Dave, diagnosed with multiple myeloma in 2015, had an eight-year remission following a stem cell transplant. When he relapsed earlier this year, his doctor, Dr. Abdullah at the University of Kansas Medical Center, recommended CAR T-cell therapy, which had just been FDA-approved for patients in his position. Dave recalls his surprise that what once felt like a “futuristic” option was now available and could be pursued immediately.

As Dave began CAR T- cell therapy, he leaned on advice he received early in his treatment: maintain a positive attitude, be informed, and work closely with his healthcare team. Physical fitness played a crucial role in his journey, allowing him to hike and stay active, which he believes aided his recovery. However, the therapy wasn’t without challenges. He experienced significant fatigue, developed Bell's palsy as a side effect, and had to constantly monitor for signs of neurotoxicity.

Laurie is Dave's "care partner," not "care giver." And she describes the intensive nature of navigating CAR T- cell therapy. She monitored Dave around the clock, prepared their home with stringent health protocols, and managed the complexities of his medication and appointments. Laurie’s commitment required self-sacrifice; she isolated from family and even stopped going to the gym to protect Dave from exposure to illness. However, she also found unexpected joy in the time spent alone with Dave, as they grew closer through shared activities and humor.

Both Dave and Laurie emphasize gratitude—appreciating their medical team, the support of their community, and the positive outcomes of CAR T-cell therapy. Their care team was deeply invested in their success, with doctors even celebrating with them on day 31 when test results confirmed Dave was in remission. Dave reflects on how fortunate he feels for his proximity to the clinic and his medical staff’s expertise, acknowledging the importance of clinical trials and the contributions of previous patients in advancing treatments like CAR T.

The episode closes with Dave’s reminder: we’re all in this together, underscoring the value of community, support systems, and the role that clinical trials play in the ongoing advancements in cancer treatment. He also shares his gratitude for anyone who's participated in a clinical trial. Without them, he wouldn't have had the opportunity to undergo this cutting-edge treatment.

This season is made possible thanks to our sponsors:

Kite, a Gilead company: http://www.kitepharma.com/

and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/

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