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/
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To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd