Marrow Masters By cover art

Marrow Masters

By: The National Bone Marrow Transplant Link
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  • Summary

  • 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. Our newest installment, 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 28,000 downloads today, we are so thrilled to offer these pods
    2024 nbmtLINK
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Episodes
  • Navigating the Transition Home with Dr. Navneet Majhail

    Navigating the Transition Home with Dr. Navneet Majhail
    May 31 2024
    In this episode of the podcast, we welcome Dr. Navneet Majhail, the Physician-in-Chief of Blood Cancers at the Sarah Cannon Transplant and Cellular Therapy Program and a widely respected leader in transplant. The focus of our discussion is the critical transitions of care that occur after patients undergo transplant and cellular therapy, a subject Dr. Majhail is deeply passionate about.Dr. Majhail highlights the complexities of managing care transitions from specialized treatment centers back to patients' local communities. This process is crucial because it involves highly specialized care that is available only at transplant centers, making it a significant challenge for patients who do not reside in those cities. The journey doesn’t end at the treatment center; once patients return home, the role of the caregivers and community doctors becomes paramount in managing ongoing care and potential complications.We delve into the multiple stakeholders involved in this process, including the primary care providers, hematologists, oncologists, behavioral health and physical therapy professionals, usually at the local level. The importance of a supportive care network, emphasizing that the caregivers take care of themselves is also highlightedOne of the key tools in ensuring smooth transitions is the survivorship care plan. Dr. Majhail describes it as a comprehensive document that includes information on the patient's cancer type, treatment details, potential complications, and follow-up care recommendations. It serves as a roadmap for both patients and their providers to manage long-term health outcomes effectively.Throughout the discussion, Dr. Majhail stressed the individualized nature of post-transplant care, underscoring that there is no one-size-fits-all approach. Each patient’s needs can vary significantly based on their specific circumstances, making personalized care plans essential.To conclude, the conversation reinforces the importance of transitional care in the journey of recovery and long-term health management for transplant and cellular therapy patients. This holistic approach not only addresses the medical needs but also the psychological and social aspects, ensuring that patients can return to their lives with the best possible support and care.Resources:International Recommendations for Screening and Preventative Practices for Long-Term Survivors of Transplantation and Cellular Therapy: A 2023 Update: https://www.sciencedirect.com/science/article/pii/S266663672301713XSarah Cannon Transplant and Cellular Therapy Program https://sarahcannon.com/service/blood-cancerTristar Centennial of Sarah Cannon Cancer Institute https://tristarcentennial.com/specialties/sarah-cannon-cancer-institute/PCORI (Patient-Centered Outcomes Research Institute) https://www.pcori.org/CIBMTR (Center for International Blood & Marrow Transplant Research) https://www.cibmtr.org/FACT (Foundation for the Accreditation of Cellular Therapy) http://www.factwebsite.org/Transplantation and Cellular Therapy Journal https://www.bbmt.org/BMT Infonet https://www.bmtinfonet.org/NMDP (National Marrow Donor Program) https://gvhdalliance.org/GVHD Alliance https://gvhdalliance.org/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/nbmtLINKnbmtLINK YouTube Page can be found by clicking here.Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
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    29 mins
  • Janet Young Shares Challenging Side Effects after AML Transplant

    Janet Young Shares Challenging Side Effects after AML Transplant
    May 31 2024

    In today's episode, we have the pleasure of speaking with Janet Young from Massachusetts, who shares her challenging yet inspiring journey with acute myeloid leukemia (AML) and her subsequent stem cell transplant. Diagnosed in March 2022, Janet underwent a transplant in August of the same year after a regimen of intensive chemotherapy. Remarkably, her transplant occurs on her ACTUAL birthday, adding a poignant touch to her recovery story.

    Janet discusses the profound fatigue she experiences post-transplant, describing it as an overwhelming tiredness that significantly limited her daily activities initially. However, over 21 months, she's progressed from barely being able to walk to her driveway to completing a two-and-a-half-mile walk, a significant achievement in her recovery.

    Another major challenge Janet faces is the loss of muscle strength, for which she has been in physical therapy, greatly improving her stamina. Cognitive issues, particularly with memory and word recall, are also significant hurdles that Janet continues to navigate. These symptoms are common among transplant recipients and will slowly improve.

    Janet also touches on Graft Versus Host Disease (GVHD), a complication of her transplant manifesting mainly in her lower limbs. Treatment for GVHD includes starting a medication called Rezurock, which she hopes will be effective.

    Her social interactions have changed, too. She spent a year isolated post-transplant, which has altered her casual relationships although her closer friendships remain strong. Janet also mentions adapting her life to manage her energy better, using the "spoon theory" to prioritize activities based on her daily energy levels.

    Concluding the interview, Janet shares how she has had to modify her approach to planning and socializing, focusing on self-care and adjusting to a new normal. She remains thankful for every new day and emphasizes the importance of support groups in her ongoing recovery.

    This powerful story not only highlights the physical and emotional challenges of dealing with AML and undergoing a stem cell transplant but also showcases the resilience and gradual return to normalcy despite the challenges of GVHD. Janet's journey is a testament to the power of medical treatment, personal determination, and community support in navigating life after a major health crisis.

    Resources:

    Dana Farber Cancer Institute https://www.dana-farber.org/

    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

    nbmtLINK YouTube Page can be found by clicking here.

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

    Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
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    20 mins
  • Expert Advice on Post-Transplant Health: A Deep Dive with Flora Stondell

    Expert Advice on Post-Transplant Health: A Deep Dive with Flora Stondell
    May 31 2024
    Today, we have the pleasure of interviewing Flora Stondell, an advanced practice manager and assistant director at UC Davis Comprehensive Cancer Center. Flora’s extensive experience in bone marrow transplants, particularly in malignant hematology, transplant, and cellular therapy provide us with invaluable insights.Flora begins by sharing her journey into the field, highlighting her accidental start in transplant care and her enduring passion for her patients. Her commitment is evident as she continues to balance her clinical work with her leadership role, always prioritizing patient care and workflow improvements.We then delved into the importance of screenings in early survivorship. Flora emphasizes that routine screenings, often neglected during the intense phases of treatment, need to be revisited post-transplant. These include mammograms, gynecologic exams, colonoscopies, dental care, and eye exams. These screenings are crucial to detect any preventable issues and address the heightened risk of certain cancers and other health concerns post-transplant.Vaccinations were another critical topic. Flora explains the different schedules for autologous and allogeneic stem cell transplant patients. Autologous patients typically start their vaccinations about six months post-transplant, while allogeneic patients’ schedules depend on their immune system status and medication regimen. She stresses the importance of working closely with healthcare providers to ensure vaccinations are administered safely and effectively.We also cover Graft-Versus-Host Disease (GVHD), a common complication where donor cells attack the recipient’s body. Flora describes the various manifestations of GVHD, with skin rashes being the most common and easier to treat, compared to gastrointestinal symptoms which are more challenging. She urges patients to report any symptoms promptly to their healthcare team to ensure early intervention and better outcomes.Flora provides reputable resources for further information on GVHD, including the GVHD Alliance, nbmtLINK, BMT Infonet, and the National Marrow Donor Program (NMDP). We also acknowledged the Meredith Cowden Foundation for its dedication to GVHD awareness and support.Caregiver support is another vital area discussed. Flora highlights the importance of acknowledging caregiver fatigue and ensuring caregivers seek support and communicate openly about their needs. She emphasizes the importance of caregivers taking care of their own health to provide better care for their loved ones.In wrapping up, Flora advises patients to be patient with their recovery process, recognizing that it can take months or even years to regain their strength. She also acknowledges the psychological impact of the transplant journey, mentioning that PTSD can occur even years later. Flora encourages patients to seek mental health support if needed.Flora’s insights were not only informative but deeply compassionate, reflecting her dedication to improving the lives of transplant patients and their families. We are grateful for her expertise and the valuable information she shared.Resources:PDF files of vaccination Schedules for Auto and Allo TransplantsUC Davis Comprehensive Cancer Center : https://health.ucdavis.edu/cancer/GVHD Alliance: https://www.gvhdalliance.org/Meredith Cowden Foundation http://www.cowdenfoundation.org/BMT Infonet https://www.bmtinfonet.org/NMDP (National Marrow Donor Program) https://bethematch.org/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/nbmtLINKnbmtLINK YouTube Page can be found by clicking here.Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
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    21 mins
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