Podcasts about bone marrow transplant

In this episode of Child Life On Call, guest Maite Rodriguez shares her daughter Alessia's inspiring journey with sickle cell disease (SCD)—from diagnosis at birth and painful crises to finding a cure through a pediatric bone marrow transplant at Memorial Sloan Kettering. Maite discusses the challenges of long-term treatments like hydroxyurea, the emotional toll of hospitalizations, and her family's decision to pursue IVF to create a genetic match. She also introduces her bilingual children's book, Just Like the Moon, which helps families explain sickle cell to children, siblings, and communities.   ⏱️ Episode Timestamps 00:05 – Newborn diagnosis and the first sickle cell pain crisis 09:00 – Daily medications: penicillin, folic acid, and hydroxyurea 20:00 – How advocacy, research, and community support make a difference 25:00 – Considering a cure: bone marrow transplant and IVF journey 31:00 – Why Memorial Sloan Kettering was chosen for Alessia's transplant 41:00 – Life after transplant: cured of sickle cell, dancing in the rain 48:00 – Writing Just Like the Moon, a bilingual sickle cell book for kids

In this episode, we sit down with Anastasia Cacavias, a registered nurse and manager of the Blood and Marrow Transplant Leukemia Program at Northside Hospital Cancer Institute in Atlanta. Anastasia walks us through the essential role that caregivers play throughout the transplant journey—from initial diagnosis to long-term recovery. Her perspective comes not only from clinical experience but from deeply personal connections with patients and their support systems.We begin by discussing the broad and intensive responsibilities caregivers take on. These range from medication management, symptom monitoring, transportation, and attending every medical appointment to providing emotional support 24/7. Anastasia explains how caregivers are not just passive companions but active partners in medical care. They're educated thoroughly before the patient begins their conditioning regimen, especially about signs of infection, graft-versus-host disease, and other complications.Once patients return home, the caregiver's role intensifies. They're responsible for maintaining a clean home environment, food preparation, hygiene assistance, and ensuring infection control—such as hand washing, mask-wearing, and visitor limitations. Anastasia offers guidance on how caregivers can prepare, including maintaining good communication, staying organized, and using a detailed education notebook provided by the hospital.Self-care for caregivers is a major focus. Anastasia emphasizes that it's okay to admit feeling overwhelmed. She encourages them to take breaks, get proper rest, eat well, and tap into family or community resources for support. Even small actions, like letting someone else bring the patient to the clinic for a few hours, can be meaningful.We also explore more medical territory—highlighting key patient needs such as hydration, nutrition, and mobility. Physical therapy is introduced before transplant and continued after, with an emphasis on realistic daily movement goals. Proper dental care, both pre- and post-transplant, is essential to avoid complications, with tips like using alcohol-free mouthwash and soft-bristled brushes.We touch on important transplant-related complications such as Graft-versus-Host Disease (GvHD) and Veno-Occlusive Disease (VOD). Anastasia details the signs to watch for, treatment protocols, and the hospital's proactive approach, including assigning dedicated GvHD nurses and maintaining 24/7 communication lines for urgent symptoms.Anastasia closes the conversation with moving stories of caregivers who went above and beyond—reminding us of the emotional strength and love that often fuels this journey. These stories reinforce her message: caregivers are central to healing. Without them, recovery would look very different.Northside Hospital: https://www.northside.com/National Marrow Donor Program (NMDP): https://bethematch.orgThis season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.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/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.

In this episode, we sit down with Lorri Pimentel of Santa Rosa, California, a resilient survivor who shares her deeply personal journey through breast cancer, acute myeloid leukemia (AML), and a life-saving bone marrow transplant. We explore not only the medical milestones but also the practical and emotional realities of navigating treatment and recovery, especially in the context of caregiving during the COVID-19 pandemic.Lorri opens by walking us through her diagnosis timeline: first with DCIS breast cancer in 2016, followed by an AML diagnosis in 2019. She underwent intense chemotherapy and, after a relapse, received a stem cell transplant in March 2021. Her story is not only one of medical complexity but also of personal upheaval—she was in the middle of a divorce and raising three children, with limited family caregiving options. Her caregivers were her friends and former work colleagues, who rotated week by week to support her recovery.We dive into Lorri's insights and hard-earned lessons about caregiving and post-transplant life. She stresses the importance of flexibility in caregiver scheduling, being prepared for early hospital discharge, and having a list of essential medical contacts readily available. She advises caregivers to undergo thorough training, keep detailed records for outpatient visits, and maintain strict medication management practices.Lorri doesn't shy away from sharing her missteps. She discusses her experience with Graft-versus-Host Disease (GvHD), the dangers of sun exposure, and complications like mucositis and insomnia. Her tips—like using a water pick, prescription mouthwash, fluoride toothpaste, and avoiding self-medicating with cannabis—are based on lived experience. She also shares less obvious insights, such as the need for UV-protective clothing, avoiding rice leftovers, and managing dry eyes with serum-based drops not yet FDA-approved.Transportation and social isolation were also major themes. Lorri emphasizes the importance of arranging reliable rides to appointments and finding indoor outlets for creativity and community. She found healing in watercolor art, music, yoga, and support groups. Her volunteer work with LLS, now Blood Cancer United, and NMDP reflects her dedication to mentoring others on the same path.We wrap up by discussing Lorri's present-day life. Now more than four years post-transplant, she's active, creative, and grounded in gratitude. Her final message is one of hope and purpose: bone marrow transplant recovery is slow, but it's life-changing, and each day is a gift worth sharing.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.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/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.

In this episode, we speak with Daniel Medina of Broomfield, Colorado, about his journey as a caregiver for his wife Miley, who was diagnosed with acute myeloid leukemia (AML) in 2021 at the young age of 27. What begins as a story of sudden diagnosis during an active summer of volleyball quickly turned into an emotional and logistical rollercoaster for Daniel, Miley, and their then two-year-old daughter.We walk through the early days of Miley's diagnosis, including a pivotal urgent care visit that led directly to hospitalization. Daniel shares how a professional connection helped secure Miley's access to top oncological care at UC Health. Despite initial chemotherapy and some success, a relapse in 2022 led to a bone marrow transplant, which ultimately helped Miley recover and thrive. Today, she's healthier and more driven than ever—running three coffee shops, parenting energetically, and even making time for beach volleyball.Throughout the conversation, we dive deep into Daniel's experience as a male caregiver. He reflects on the challenges of holding together family life, work obligations, and emotional well-being while supporting a critically ill spouse. He shares how difficult it was to ask for help—something that went against his natural instinct for independence—and how family, colleagues, and mindfulness practices helped him cope.Daniel is candid about the helplessness he felt, the fears of losing his partner, and the emotional weight of trying to appear strong for his daughter. He explains how something as small as being physically present, even if it's just sitting silently in the hospital room, becomes powerful. We also learn how critical digital communities like the CancerBuddy app were in helping him find hope, practical advice, and emotional connection during a time when Google only offered grim statistics.We explore how Miley's recovery affected not only their family dynamics but also their daughter, who—despite her young age—continues to carry emotional echoes of the experience. Daniel highlights the importance of honoring milestones and using them to reflect on growth, healing, and gratitude. He encourages all caregivers to stay grounded, stay present, and reach out for support when needed. His perspective is not only honest and raw, but also deeply human, offering valuable insight into the caregiving journey from a role that's often underrepresented.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.com/CancerBuddy: https://bonemarrow.org/support-and-financial-aid/support/about-cancerbuddy 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.

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-brandtAdditional Resources:Leukemia & Lymphoma Society (LLS) is now Blood Cancer United: https://bloodcancerunited.org/Be The Match – https://bethematch.orgMedicine Assistance Tool (MAT) – https://medicineassistancetool.orgNeedyMeds – https://www.needymeds.orgTriage Cancer – https://triagecancer.orgRonald McDonald House Charities – https://rmhc.orgHope Lodge – https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.htmlVocational 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/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.

Welcome to Season 18 of Marrow Masters, produced for the National Bone Marrow Transplant Link, and sponsored by Sanofi and Jazz Pharmaceuticals. This season is all about the caregivers. Our guests will offer up their best tips, experiences and advice. We'll cover the importance of self-care and share heartwarming stories of compassion and love. You'll hear from an RN and transplant manager at Atlanta's Northside Hospital, a CEO of a cancer organization who found herself in the cargiver role, an oncology social worker, a survivor who had an army of caregivers, and a male and female caregiver. You'll want to hear how those roles affected the dynamics of their relationships.   This season, we're also including an empathy exercise- demonstrated by the National Bone Marrow Transplant LINK's own social worker, Jennifer Gillette. While most of us are fortunate not to know first-hand what it's like to have cancer, this exercise will open your eyes to what your loved one may be experiencing.Please share this podcast with someone you think would benefit from it.  And don't miss future episodes of our show – follow Marrow Masters for free on Apple, Spotify, YouTube, or wherever you're listening right now.  Marrow Masters is produced for the National Bone Marrow Transplant Link. Established in 1992, the LINK strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow transplant, from diagnosis through survivorship.  The Marrow Masters podcast is produced by JAG Podcast productions, online at JAGPodcastProductions.com.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.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/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.

Two men, one from the Chicago area, the other from Maryland, met for the first time in west suburban Maywood, three years after one of them made a life-saving donation of bone marrow to the other.

Two men, one from the Chicago area, the other from Maryland, met for the first time in west suburban Maywood, three years after one of them made a life-saving donation of bone marrow to the other.

Two men, one from the Chicago area, the other from Maryland, met for the first time in west suburban Maywood, three years after one of them made a life-saving donation of bone marrow to the other.

In this episode, we sit down with Dr. Chris Dandoy, Associate Professor of Clinical Pediatrics and bone marrow transplant physician at Cincinnati Children's Hospital. Dr. Dandoy shares his deep experience working with adolescents and young adults (AYAs), focusing on the unique challenges they face during and after cancer treatment. Our conversation centers around empowering AYAs to take ownership of their healthcare journey, improving outcomes, and restoring quality of life.Dr. Dandoy introduces us to Engraft, a collaborative learning network he founded, which unites providers, patients, families, industry partners, and nonprofits to improve survival and quality of life post-stem cell transplant. Rather than each center working in isolation, Engraft allows for real-time communication and problem-solving across 15 centers, helping everyone learn from each other's best practices.A core message in our conversation is the importance of ownership—encouraging AYAs to ask questions, understand their medications, and advocate for themselves. We explore the concept of “ownership” through examples, like advocating for the removal of central lines after they're no longer medically necessary, and understanding the role and risks of medications such as immunosuppressants and anti-infectives.Dr. Dandoy walks us through strategies to support medication adherence, such as using reminder apps, setting daily routines, and involving friends or caregivers for support. He also emphasizes the temporary nature of this intense medication schedule, helping patients see it as a phase, not a life sentence.We highlight how important it is for AYAs to stay engaged—learning about their labs, asking what new medications are for, and writing down questions for their healthcare team. Chris stresses that they don't have to memorize everything; the goal is communication and awareness, not perfection.For caregivers, Chris offers validation and encouragement, reminding them this is a marathon with tough stretches, but also moments of progress. He urges caregivers to walk beside their loved ones—not behind or in front—fostering independence and shared decision-making.Dr. Dandoy closes with an inspiring story of a young survivor who endured ICU-level complications but is now back to running races and embracing life fully. It's a powerful reminder that while the transplant journey is grueling, it's also transformative.More:Engraft Learning Network: https://www.engraftlearningnetwork.org/Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.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/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

In this episode, we talk with David Hartley, PhD, MPH, who shares his deeply personal experience as both a caregiver and a scientist. David is chair of the board for Engraft, a learning network focused on improving outcomes in transplant and cellular therapy through collaboration and shared data. While he brings professional expertise in infectious diseases and epidemiology, our conversation centers on his journey as a father navigating his son Devin's stem cell transplant at age 13.We begin by discussing Devin's sudden diagnosis after months of unexplained symptoms. Despite initial medical dismissal, David's persistence—fueled by his medical background—led to a hematologist visit that quickly changed everything. From that point, their lives became dominated by a rapid series of decisions leading to a bone marrow transplant at a center hours from home. With a second child, sick parent, and full-time jobs, David and his wife adopted a "divide and conquer" strategy: she managed Devin's care in-hospital, while he held down things at home.Throughout, David stresses the overwhelming nature of transplant. It's relentless and multifaceted—emotionally, logistically, and financially. His wife tracked medications, schedules, and insurance battles. One notable success was avoiding a lawsuit thanks to her meticulous record-keeping and strong communication with their insurance provider. David's role included managing home infusions and learning as much as possible about the transplant process to mitigate risks, particularly infections. They juggled roles and adapted constantly, ensuring redundancy in caregiving in case one of them became unavailable.We delve into the emotional toll and the universality of caregiver fatigue. David admits to not managing his own stress well, noting long-term impacts. He discusses a study linking chronic stress to telomere shortening (he explains what that is- see below for the link), highlighting the physical consequences of caregiver strain. Still, he emphasizes the importance of accepting help and finding moments for self-care, however small.David shares powerful insights on advocacy, highlighting it as a team effort rather than a confrontation. He and his wife advocated for Devin's pain management, educational access, and protection from medical errors. He stresses the value of caregivers' unique skills and the importance of focusing on the outcomes that matter most to each family—whether clinical or social.Later in the episode, David offers a scientist's perspective on the variability in patient outcomes and the limitations of statistics in predicting individual experiences. His reflections underscore the complexity of transplant medicine and the value of shared data systems like Engraft. He also reminds us not to panic over single research findings, advocating for a balanced, critical view of medical literature.We close with the good news: Devin is now a healthy, wise young adult. David expresses deep gratitude to the care teams and support networks that helped them through. His story is a testament to resilience, collaboration, and the essential role of caregivers in the transplant journey.Engraft: www.engraftlearningnetwork.orgTriage Cancer: https://triagecancer.orgAARP article about Telomore:  https://www.aarp.org/health/conditions-treatments/elizabeth-blackburn-stress-dna-hd/Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.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/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

Thank you for joining us for this week's episode as we covered chapters 12 and 13 of The Enemy Within By Kris Lundgaard.

Show Notes: Alison Wakoff Loren went to St Louis to medical school at Washington University. She specialized in internal medicine and later completed a subspecialty fellowship in hematology oncology at the University of Pennsylvania. She met her husband in medical school and they have three children all in their early twenties. Alison  is now the chief of the Division of Hematology Oncology at the University of Pennsylvania, specializing in bone marrow transplantation, a curative therapy for blood cancer. Taking Care of Patients Alison finds the best part of her job to be taking care of patients, especially those who have just been diagnosed with leukemia. She gets to know people when they are in a vulnerable place and understand their lives, which is a privilege. She also does a lot of administrative work, mentoring trainees and faculty, helping them understand their passions and connecting them with opportunities. Alison is proud of her mentoring success stories. She encourages everyone to show gratitude and warmth, as the world is not always generous, and it is important to show that we can make a difference for each other by showing warmth and gratitude. She also shares a story of mentoring a talented MD and PhD candidate who was unhappy in her research role.  Helping Patients with Leukemia Alison discusses the fear and uncertainty people face when discovering they have leukemia. She shares her experiences in delivering sad news to a patient who had been a high school history teacher and had leukemia come back. She mentions that people have incredibly generous spirits and sometimes don't behave their best when they're scared. She also shares examples of people making decisions that matter to their loved ones, such as stopping treatment or continuing treatment when they don't want to. Alison also discusses the range of responses people have when they have to deliver sad news. She explains that most people know they're in for an uphill climb, and it's rare to be surprised. Alison specializes in bone marrow transplants, which are intensive but curative intent therapies, and she emphasizes the importance of laying groundwork ahead of time to make difficult conversations less shocking and offering hope while grounding the conversation. She also stresses the importance of being honest and respectful in her interactions with patients. Fertility Preservation in  Cancer Treatment The conversation turns to Alison's research and the importance of fertility preservation in cancer treatment, which can harm reproductive capacity and lead to infertility. Oncology teams often don't discuss this topic, partly because they are focused on cancer and not reproductive endocrinologists. However, there is a focus on making sure all patients are counseled about the reproductive impact of their treatments and reproductive options to engage in fertility preservation before starting cancer treatments. Alison explains what is recommended for women. She mentions that it is important to discuss these options before starting cancer treatment, as it reduces distress and decision regret for people after treatment. Alison is fortunate to be able to speak and advocate for fertility preservation for people with blood cancers, which represents a special population in oncology care. She has been fortunate to co-chair an effort to develop guidelines for fertility preservation from a large cancer organization. She explains that  colleagues in reproductive science are doing amazing research to extend options for reproductive care before and after cancer treatment, which is exciting to inform oncology clinicians and advocate for insurance coverage for these treatments. Family Life, Running, and Circadian Rhythms Alison shares her experiences with her children, including a daughter who works at the Amherst College Library, an older son considering medical school, and a younger son at Bates College in Maine. Her daughter has inspired her to think about women in the workplace, as she was criticized for not valuing women in her division and for hiring women because they are cheaper. Alison also shares her experience with running, which she enjoys but has to get up early to get in before work. She talks about the concept of morning and night people, stating that people have their own internal clocks. She also mentions that research into the biology of the circadian clock is still in its early stages.  Influential Harvard Courses and Professors Alison shares her experiences at Harvard, including taking courses with Stephen Jay Gould and Dick Lewontin, who were incredibly intelligent and insightful. She also took Act 10 as a senior, which was an unexpected experience that helped her learn different ways of thinking about the subject. Alison  volunteered at the Mission Hill after-school program, which allowed her to get to know the kids and families there. She tried out for various extracurriculars, such as singing and photography, but found it intimidating. She also mentions the training program for photographers. Timestamps: 01:51: Alison Wakoff Loren's Medical Journey  04:12: Motivations and Rewards in Patient Care  22:20: Mentoring Success Stories  22:36: Challenges and Insights in Patient Care  24:17: Balancing Professional and Personal Life  24:32: Research and Advocacy in Fertility Preservation  28:54: Influences and Reflections on Harvard Education  37:25: Extracurricular Activities and Personal Growth  Links: Penn Medicine Website: https://www.pennmedicine.org/providers/profile/alison-loren American Society of Clinical Oncology: https://www.asco.org/ Leukemia and Lymphoma Society: https://www.lls.org/ Featured Non-profit: The featured non-profit of this episode of The 92 Report is recommended by Ming Chen who reports: “ One nonprofit that I've been involved in is the Keswick Foundation, which funds pilot programs in Hong Kong and mainland China to help the community serve needs that are not being met by the government. So we work with family and vulnerable populations. We work with the elderly, and we work with things like helping promote social work in China, as well as clinical psychologists in different NGOs around the region. The other nonprofit that I am on the Advisory Council of is the Asian American foundation, TAF for short, T, A, A, F, F. The Asian American foundation, basically, is a platform that gets together different organizations around anti hate, changing the narrative education, helping to advocate for Asian American history taught in public schools, as well as narrative change representation in Hollywood and beyond. And again, it was founded around the 2020, around the growing disturbing rhetoric against Asians with the rise of COVID So yeah, those are two nonprofit organizations that I'm involved with. So again, one nonprofit that's been on the board for for many, many years is called the Keswick Foundation, and it funds pilot programs in Hong Kong as well as Mainland China. And then the Asian American foundation. If you want to learn more about the Asian American foundation, it's www dot T, A, A, f.org, check it out.” To learn more about their work, visit:  The Asian American Foundation: https://www.taaf.org/ The Keswick Foundation: https://www.keswickfoundation.org.hk/    

A German bone marrow transplant donor stepped up to save the life of a stranger. Their new bond turned into a special friendship. Guests include donor Silja Löw, Dr. Joseph McGuirk, division director hematologic malignancies and cellular therapeutics, The University of Kansas Cancer Center and Mindy Allen, lead blood and marrow transplant coordinator, The University of Kansas Cancer Center.

Crystal Conroy's son Ashton was diagnosed with a very rare form of Pediatric Leukemia known as Acute MegaKaryblastic Leukemia or AMKL in March of 2024 when he was 10 1/2 months old. Ashton has been at Boston Children's Hospital for the past 65 days along with Crystal as the goal is to get him to remission so that he would be able to receive a Bone Marrow Transplant. That goal has not been reached and in fact, his doctors just confirmed that Ashton has had a relapse. 

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

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-nutritionGVHD Alliance: https://www.gvhdalliance.orgThank 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/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

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.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionBook: The Body Keeps the Score: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748Thank 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/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

In this Cancer Matters podcast, Dr Bill Nelson speaks with Dr Nina Wagner-Johnston about the treatment of lymphoma and the newly opened Cellular Therapy Program at the Johns Hopkins Kimmel Cancer Center at Sibley Memorial Hospital in Washington DC.  Lymphoma is a blood cancer of the immune system. There are many types of lymphomas with a broad range of aggressiveness and clinical behaviors but they are also among the most treatable. Learn more about the different types of lymphomas here. The Cellular Therapy Program at Sibley Memorial Hospital makes bone marrow transplants more readily available in the Washington DC region allowing patients to remain closer to home while receiving treatment.

The infections disease landscape is constantly changing - challenging our standard treatments. Can new - as well as ancient - therapies be the answer? Hear from experts on the cutting edge of phage therapy, HIV/AIDS research and cancer care about what is on the horizon to improve human health. Series: "Stem Cell Channel" [Health and Medicine] [Show ID: 39982]

The infections disease landscape is constantly changing - challenging our standard treatments. Can new - as well as ancient - therapies be the answer? Hear from experts on the cutting edge of phage therapy, HIV/AIDS research and cancer care about what is on the horizon to improve human health. Series: "Stem Cell Channel" [Health and Medicine] [Show ID: 39982]

The infections disease landscape is constantly changing - challenging our standard treatments. Can new - as well as ancient - therapies be the answer? Hear from experts on the cutting edge of phage therapy, HIV/AIDS research and cancer care about what is on the horizon to improve human health. Series: "Stem Cell Channel" [Health and Medicine] [Show ID: 39982]

The infections disease landscape is constantly changing - challenging our standard treatments. Can new - as well as ancient - therapies be the answer? Hear from experts on the cutting edge of phage therapy, HIV/AIDS research and cancer care about what is on the horizon to improve human health. Series: "Stem Cell Channel" [Health and Medicine] [Show ID: 39982]

The infections disease landscape is constantly changing - challenging our standard treatments. Can new - as well as ancient - therapies be the answer? Hear from experts on the cutting edge of phage therapy, HIV/AIDS research and cancer care about what is on the horizon to improve human health. Series: "Stem Cell Channel" [Health and Medicine] [Show ID: 39982]

The infections disease landscape is constantly changing - challenging our standard treatments. Can new - as well as ancient - therapies be the answer? Hear from experts on the cutting edge of phage therapy, HIV/AIDS research and cancer care about what is on the horizon to improve human health. Series: "Stem Cell Channel" [Health and Medicine] [Show ID: 39982]

The infections disease landscape is constantly changing - challenging our standard treatments. Can new - as well as ancient - therapies be the answer? Hear from experts on the cutting edge of phage therapy, HIV/AIDS research and cancer care about what is on the horizon to improve human health. Series: "Stem Cell Channel" [Health and Medicine] [Show ID: 39982]

On this week's episode of the PQI Podcast, we dive into the transformative world of stem cell transplantation with David Samuel, PharmD, a dedicated Stem Cell Transplant Clinical Pharmacist at Texas Oncology in Dallas.David shares his inspiring journey through oncology pharmacy and offers a unique glimpse into his pivotal role in supporting outpatient stem cell transplant recipients and CAR-T cell therapy patients. He also highlights the vital patient education initiatives at Texas Oncology's Bone Marrow Transplant program, emphasizing the human connection that underpins effective oncology care.Tune in for an insightful conversation that highlights the vital role clinical pharmacists play in not just delivering care but also in empowering patients through their oncology journeys.

In season 15 of the Marrow Masters podcast, we will focus on CAR T cellular therapy. This innovative and life saving treatment is gaining momentum and has become a first line course of treatment in recent years.  What does CAR T have in common with more traditional transplants? How does it differ?  What is the first 100 days like?  And how have clinical trials brought us to this moment?We will hear from physicians at the heart of this cutting-edge therapy, from survivors, and from other members of the care team, including a nurse and psychologist.Season 15 of the Marrow Masters podcast is sponsored by Kite, a Gilead company, and Bristol Myers Squibb. Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

September is Sickle Cell Awareness Month. In this Cancer Matters podcast, Dr Bill Nelson, the Director of the Johns Hopkins Kimmel Cancer Center, speaks to Dr Rick Jones and Dr Robert Brodsky about treating sickle cell anemia, an inherited disorder where mutations in the globin gene cause the red blood cells to take on a sickle shape, leading to severe pain and organ damage. They discuss and compare the types of bone marrow transplants currently used to treat the disease and highlight the significant improvements in reducing complications, such as graft-versus-host disease and graft rejection.

Sarah is a writer and this is the  first time her work has been published in the New York Times. the link is below. https://www.nytimes.com/2024/08/23/style/modern-love-looking-for-my-mother.htmlThis is an unusual love story where a Pakistani woman proposed to her lover which was culturally not the norm. They were both young and very much in love. Unfortunately, Kaukab, translated from Arabic, means "star" or "constellation"  was diagnosed with Leukemia  a few years after their daughter's were born. Sarah's parents went to London  for a bone marrow transplant.This was the beginning of tearing  the family apart. The girls moved in with family members in Saudi Arabia, while their dad stayed in London. Her father was distraught and couldn't even tell the girls that their mother had passed away until days later. They did not attend their mother's funeral, though they were close by. The family members blamed Sarah's father for Kaukab's death.This and more lead to Sarah blaming herself for her mother's death. She believes that her mom was trying to teach her to let go, but either way Sarah has spent a good part of her life blaming herself for her mother's death. Sarah  has very few personal possessions to remember her mother by. She has a card that her mother wrote her when in the hospital, that she still has today. Her mother had hopes of seeing her girls again but fate had a different plan.  And not too long ago, Sarah was able to bring home two embroideries that her mother had made, many years ago and they hang in Sarah's home today.  Sarah's relatives have told her, that her mother handled her illness very eloquently,  she didn't give into despair and she accepted her illness and her death with grace.My guest has plans for writing fiction,  short stories, kids books and more.TWITTER:https://x.com/SarayMaray  "Should Have Listened To My Mother" is an ongoing conversation about mothers/female role models and the roles they play in our lives. Jackie's guests were open and hones and answer the question, are you who you are today because of, or in spite of, your mother and so much more. You'll be amazed at what the responses are.Gina Kunadian wrote this 5 Star review on Apple Podcast:SHLTMM TESTIMONIAL GINA KUNADIAN JUNE 18, 2024“A Heartfelt and Insightful Exploration of Maternal Love”Jackie Tantillo's “Should Have Listened To My Mother” Podcast is a treasure and it's clear why it's a 2023 People's Choice Podcast Award Nominee. This show delves into the profound impact mother and maternal role models have on our lives through personal stories and reflections.Each episode offers a chance to learn how different individuals have been shaped by their mothers' actions and words. Jackie skillfully guides these conversations, revealing why guests with similar backgrounds have forged different paths.This podcast is a collection of timeless stories that highlight the powerful role of maternal figures in our society. Whether your mother influenced you positively or you thrived despite challenges, this show resonates deeply.I highly recommend “Should Have Listened To My Mother” Podcast for its insightful, heartfelt and enriching content.Gina Kunadian"Should Have Listened To My Mother" would not be possible without the generosity, sincerity and insight from my guests. In 2018/2019, in getting ready to launch my podcast, so many were willing to give their time and share their personal stories of their relationship with their mother, for better or worse and what they learned from that maternal relationship. My guests and I Some of my guests include Nationally and Internationally recognized authors, Journalists, Columbia University Professors, Health Practitioners, Scientists, Artists, Attorneys, Baritone Singer, Pulitzer Prize Winning Journalist, Activists, Freighter Sea Captain, Film Production Manager, Professor of Writing Montclair State University, Attorney and family advocate @CUNY Law; NYC First Responder/NYC Firefighter, Child and Adult Special Needs Activist, Property Manager, Chefs, Self Help Advocates, therapists and so many more talented and insightful women and men.Jackie has worked in the broadcasting industry for over four decades. She has interviewed many fascinating people including musicians, celebrities, authors, activists, entrepreneurs, politicians and more.A big thank you goes to Ricky Soto, NYC based Graphic Designer, who created the logo for "Should Have Listened To My Mother".Check out our website for more background information: https://www.jackietantillo.com/Or more demos of what's to come at https://soundcloud.com/jackie-tantilloFind audio versions of the podcast here: https://shltmm.simplecast.com/Spotify Link: https://open.spotify.com/show/60j14qCcks4AP3JUrWrc2MLink to website and show notes: https://shltmm.simplecast.com/Listen wherever you find podcasts:Apple PodcastsAmazon MusicGaanaIHeartRadio RadioDeezerSpotifyPandoraItunesFacebook:https://www.facebook.com/ShouldHaveListenedToMyMotherhttps://www.facebook.com/jackietantilloInstagram:https://www.instagram.com/shouldhavelistenedtomymother/https://www.instagram.com/jackietantillo7/LinkedIn:https://www.linkedin.com/in/jackie-tantillo/YOUTUBE: https://www.youtube.com/@ShouldHaveListenedToMyMother

The survival chances of a Auckland cancer patient have been cut dramatically after he was forced to wait six months for a bone marrow transplant. Ruth Hill reports.

In this episode, we chat with JR Brandt of Montana, an acute lymphocytic leukemia (ALL) survivor, about his journey through diagnosis, treatment, and living with chronic graft-versus-host disease (cGVHD). JR shares his initial diagnosis story, describing how what he thought was a minor infection led to a leukemia diagnosis complicated by the Philadelphia Positive chromosome. He underwent 26 days of chemotherapy and was eventually cleared for a bone marrow stem cell transplant at Stanford University in March 2017.JR discusses the onset of chronic GVHD symptoms about a year after his transplant, beginning with skin changes. He was treated with Rituxan infusions, which provided temporary relief. Over the years, as symptoms re-emerged, JR continued Rituxan treatments and adjusted his care plan, even after moving from California to Montana. He highlights the importance of finding and continuing care with familiar healthcare professionals, like his physician who (fortunately) moved to Billings Clinic.Beyond skin issues, JR describes experiencing joint tightness, dry eyes, dysphagia, and dry mouth. He mentions practical solutions like using Biotene toothpaste for dry mouth and preservative-free Refresh Plus eyedrops for dry eyes. JR also shares the importance of physical and occupational therapy, which helped him develop a personalized exercise routine. Over time, he transitioned to aquatic aerobics and massage therapy, finding these methods more effective for managing his symptoms.JR emphasizes the significance of staying active, despite physical limitations, by adapting activities like biking with an e-bike and engaging in water aerobics. He also discusses the importance of sun protection and practical tips for managing GVHD symptoms, like using a sun hat and sunblock.JR addresses the mental health challenges of living with chronic illness, equating his experiences to PTSD and stressing the importance of setting goals and making plans to stay motivated. He shares how maintaining an active lifestyle and staying connected with his family helps him manage anxiety and stress.When discussing his career, JR explains how his background in healthcare was both a benefit and a challenge. He advises others with disabilities to utilize vocational rehabilitation services to explore new career paths. JR also encourages being your own patient advocate, ensuring all medical information is shared among healthcare providers to provide comprehensive care.JR concludes with the importance of using available resources, like the Americans with Disabilities Act, for mobility aids and other accommodations (link below). He highlights the need for continuous learning and resourcefulness in managing chronic GVHD and living life to the fullest. Products mentioned by JR in this episode:Refresh Eye Drops: https://www.refresheyedrops.com/Biotene for Dry Mouth: https://www.biotene.com/DaBrim Helmet/SunShade: https://dabrim.com/Oofos shoes: https://www.oofos.com/Mechanix Gloves: https://www.mechanix.com/Dycem Non-Slip tape: https://www.dycem-ns.com/Tryvaya (Prescription) Nasal Spray for Dry Eye: https://www.tyrvaya.com/Full list of Vocational Rehabilitation Agencies for all 50 states: https://rsa.ed.gov/about/statesAmericans With Disabilities Act (ADA) Requirements for Power-Driven Mobility Devices: https://www.ada.gov/resources/opdmds/This season is made possible thanks to donations from Syndax and Incyte.https://syndax.com/https://incyte.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

This epsiode includes content related to reproductive organs and sexual health and may not be suitable for all listeners.In this episode, we speak with Dr. Oluwatosin "Tosin" Goje, an Associate Professor of OBGYN and reproductive biology at the Cleveland Clinic. We delve into the critical and often under-discussed topic of female sexual health issues related to chronic genital graft-versus-host disease (GVHD), a condition affecting many women post bone marrow transplant.Dr. Goje begins by highlighting the prevalence of sexual dysfunction among female survivors of malignancies, particularly those who have undergone bone marrow transplants. Astonishingly, 80% of female survivors report no significant improvement in their sexual function even five years post-transplant. This issue, often underdiagnosed and unspoken about, affects their quality of life despite their physical recovery.She explains that the persistent sexual dysfunction is multifactorial. Factors include the systemic effects of chronic GVHD, which can cause fatigue and changes in body appearance, making patients feel less attractive. Chronic genital GVHD specifically affects the vulva and vagina, causing changes like thickening, rawness, and atrophy, leading to pain with intimacy, burning, and even bleeding. Additionally, medications can alter libido, and the overall psychosocial burden of their diagnosis and treatment exacerbates these issues.Dr. Goje emphasizes the importance of a multidisciplinary approach to manage these problems. She details the symptoms of genital GVHD and the necessity of individualized treatment plans. Hormone replacement therapy is essential for those with premature ovarian insufficiency or menopause, which can be accelerated by the transplant. Vaginal estrogen or other moisturizers and lubricants are often required, along with immunosuppressants like topical clobetasol to manage inflammation.Communication emerges as a vital theme throughout our conversation. Dr. Goje stresses that healthcare providers need to proactively ask about sexual health issues. Patients, often so grateful for their survival, do not prioritize these concerns. Utilizing validated questionnaires can help initiate these crucial discussions and overcome hesitation to begin the conversation. For patients, Dr. Goji advises regular consultations with a gynecologist and open discussions about their medications and any sexual health issues they experience, even before diagnosis.Addressing the specific needs of younger women, Dr. Goje discusses options like egg freezing before treatment to preserve fertility. She also notes that many foundations and insurance plans provide financial support for these procedures.Dr. Goje highlights the various treatments available for managing sexual dysfunction, including the use of silicone dilators, surgical interventions, and laser therapy. She encourages couples to communicate openly about their sexual health and consider sex therapy or couples therapy to address issues together. For patients experiencing chronic vaginal pain or infections, she recommends appropriate medical treatments, including potential surgery or laser treatment. She emphasizes the need for accurate diagnosis and management.Finally, Dr. Goje shares poignant stories from her practice, illustrating her deep commitment to her patients' holistic health. She reminds us that the goal is not just survival but also ensuring a quality life post-treatment.In another episode this season, we discuss male sexual health as it relates to GVHD.More Information:Cleveland Clinic - https://my.clevelandclinic.orgReplens - https://www.replens.comLuvena -https://luvena.comRevaree Moisturizer: https://hellobonafide.com/products/revareeMonaLisa Touch Laser - https://www.smilemonalisa.comNational 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/

In today's podcast, we have the pleasure of speaking with Angie Giallourakis, a dedicated advocate and founder of the Steven G. Cancer Foundation and Elephants and Tea. Angie shares her powerful story of being a caregiver to her son Steven, who battled cancer twice. Steven was first diagnosed with stage four osteosarcoma in 2006, and later with secondary acute myelogenous leukemia (AML) in 2008, necessitating a bone marrow transplant.Angie recounts the emotional and physical toll of Steven's journey, describing the intense periods of treatment and the unexpected challenges they faced. After his bone marrow transplant, Steven experienced graft-versus-host disease (GVHD). Angie shares vivid anecdotes, including a harrowing moment when Steven's salivary glands swelled, causing his face to balloon. This incident, among others, highlights the unpredictable nature of GVHD and the constant vigilance required from caregivers.Angie emphasizes the importance of stress management for caregivers. She advocates for finding personal ways to cope, whether through exercise, yoga, meditation, or prayer. Her own methods include Yoga Nidra, a type of meditation, and seeking solace in prayer. She also stresses the importance of good nutrition and staying hydrated, which can be challenging during long hospital stays.Drawing from her experiences, Angie advises caregivers to seek help when needed and to communicate openly with their loved ones and medical teams. She underscores the necessity of validating the patient's pain and symptoms, as Steven's experience with inflammation throughout his body was initially dismissed by some as psychological.The conversation shifts to Angie's founding of the Steven G. Cancer Foundation. Motivated by the outdated treatments Steven received, she aimed to raise awareness and fund research for adolescent and young adult (AYA) cancer. She also talks about Elephants and Tea, a magazine by and for cancer patients, founded with her son Nick. The magazine provides a platform for unfiltered stories from cancer patients and has expanded to include workshops, community support, and therapeutic resources.Angie's message to new caregivers is clear: understand the potential challenges, communicate effectively, and don't hesitate to ask for and accept help. She highlights the importance of social support, both for patients and caregivers, to navigate the emotional and physical demands of cancer treatment.As we wrap up, Angie encourages listeners to reach out to organizations, consume available resources, and connect with others in similar situations. Her final words resonate with a message of hope and validation: you are not alone in this journey.More:Steven G. Cancer Foundation: https://www.stevengcancerfoundation.orgElephants and Tea: https://www.elephantsandtea.comNational 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.This season is made possible thanks to donations from Syndax and Incyte.https://syndax.com/https://incyte.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

This epsiode includes content related to reproductive organs and sexual health and may not be suitable for all listeners.In this podcast, we welcome Dr. Jose Flores, an expert in sexual and reproductive medicine at New York's Memorial Sloan Kettering Cancer Center. We dive deep into the often challenging but crucial topic of male sexuality, particularly in the context of cancer treatment and graft versus host disease (GVHD).Dr. Flores begins by distinguishing between sexual dysfunction and erectile dysfunction (ED). He emphasizes that sexual dysfunction encompasses various issues beyond just achieving erections, such as ejaculation problems, orgasm issues, decreased sex drive, and changes in penile shape. This broader understanding is essential when discussing sexual health with patients.The prevalence of ED after cancer treatment is notably high, with up to 60-70% of men experiencing it post-chemotherapy, and even higher rates following pelvic surgery, specifically. Low testosterone levels also contribute significantly to sexual dysfunction, particularly after treatments targeting the pelvic area.A critical aspect of addressing ED is breaking the wall of silence around it. Dr. Flores stresses the importance of open communication between patients and healthcare providers. Initiating conversations about sexual health can lead to better assessments and treatments. He outlines the initial steps in diagnosing ED, including patient questionnaires and lab tests, and underscores the need for healthcare providers to proactively ask patients about their sexual health.The discussion then shifts to the impact of GVHD on sexual function. Dr. Flores notes that about 70% of men post-bone marrow or stem cell transplant suffer from low testosterone and ED. Unfortunately, without intervention, these issues do not typically resolve on their own. Patients must seek help to explore treatment options.Dr. Flores explains the ED treatment model, which follows a stepwise approach. The first step includes lifestyle modifications and the use of PDE-5 inhibitors like Viagra and Cialis. If these are ineffective, injection therapy is the next step, followed by mechanical aids like penile pumps and, as a last resort, penile implants.Myths and realities of PDE-5 inhibitors are addressed, clarifying that these medications require proper usage, including an empty stomach for Viagra and sufficient time for absorption for Cialis, along with sexual stimulation to be effective. Proper education on these aspects can significantly enhance their effectiveness.Low testosterone, particularly after cancer treatment, is another major topic. Dr. Flores discusses the complexities of testosterone replacement therapy (TRT), including potential risks like polycythemia, effects on fertility, and the necessity of screening for conditions like sleep apnea and prostate cancer before starting treatment. He advises patients to preserve fertility before undergoing cancer treatments and outlines options for those with compromised fertility post-treatment.The conversation concludes with Dr. Flores urging patients to be proactive about their sexual and reproductive health. He highlights the importance of seeking specialized care and the positive impact it can have on overall quality of life. Throughout the discussion, Dr. Flores's compassionate approach underscores the importance of addressing these sensitive issues openly and effectively.Memorial Sloan Kettering Cancer Center: https://www.mskcc.orgInternational Index of Erectile Dysfunction: https://www.uptodate.comTestosterone Replacement Therapy Information: https://www.urologyhealth.orgThis season is made possible thanks to donations from Syndax and Incyte.https://syndax.com/https://incyte.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Did you know that after a bone marrow transplant, if you left blood at a crime scene, it could trace back to your donor, not you? That's exactly what the doctor told my brother, who's gearing up for a transplant due to his recent cancer diagnosis. Sounds like something straight out of a crime thriller - where the real perpetrator is nowhere near the crime! It makes me realize maybe I've been watching a little too much true crime.

When Randy Flenker stood up to a life or death diagnosis, a complete stranger was standing up, too. That person made a life-saving donation halfway around the world. He recently came to Kansas City to meet his new blood brother in person.

2023 ended with an exciting biotech breakthrough for sickle cell patients. A gene-editing therapy using the revolutionary CRISPR technology provides new hope and options for the nearly 100,000 Americans with sickle cell disease. In this episode, we talk with the company behind one of the life-changing therapies, CASGEVY, and speak with two advocates for sickle cell patients. 

We have an amazing program in store for you this Saturday as The Word on Medicine explores the world of CAR-T Cell Therapy. Investigators at the MCW Cancer Center have now treated their 100th patient using a process that they developed which extracts healthy T-cells from the patient's body to manufacture a personalized, and potentially lifesaving, treatment for their unique form of blood cancer. With much success, the team has been led by Dr. Nirav Shah. Dr Shah is an expert in CAR-T cell therapy, and is joined by Katie Zellner (PA), who has been with MCW and Froedtert Health since 2009 in the field of Bone Marrow Transplant. Patients Joel and Keen add the patient perspective, which is why The Word on Medicine is so unique in bringing our listeners what is really important in medical breakthroughs and scientific discovery. Make sure to listen to this inspiring program!

In this week's episode we'll discuss the prognostic value of the Chronic Lymphocytic Leukemia International Prognostic Index in the era of targeted therapies, learn how peak ADAMTS13 activity can be used to assess ADAMTS13 conformation and risk of relapse in immune-mediated thrombotic thrombocytopenic purpura, and discuss the findings from a phase 2 trial of haploidentical bone marrow transplant in sickle cell disease. Featured ArticlesReassessing the Chronic Lymphocytic Leukemia International Prognostic Index in the era of targeted therapies Peak ADAMTS13 activity to assess ADAMTS13 conformation and risk of relapse in immune-mediated Thrombotic Thrombocytopenic Purpura An international learning collaborative phase 2 trial for haploidentical bone marrow transplant in sickle cell disease 

In this episode, Peggy interviews Beth Ades, who shares her compelling journey after being diagnosed with Myelodysplastic Syndrome (MDS) in 2021. Beth's story begins with mysterious bruises on her legs, leading to a diagnosis that required immediate hospitalization and numerous tests. Despite a harrowing seven-month diagnostic process, Beth was eventually diagnosed with MDS and was told her only chance of survival was a bone marrow transplant.Beth recounts the emotional and physical challenges she faced, including a life-saving transplant from a 19-year-old donor in Germany. The connection between Beth and her donor has evolved into a meaningful relationship, showcasing the profound impact of such donations. Despite the difficulties, Beth's experience has been transformative, igniting a passion in her donor to pursue medicine and advocate for bone marrow registries.Post-transplant, Beth faced severe side effects such as mucositis, which she describes as far more than just mouth sores, but a condition affecting her entire gastrointestinal tract. Her proactive approach and close communication with her medical team were crucial in managing these issues.  This acute GVHD passed, but she still deals with chronic GVHD in her eyes.Beth also shares the wisdom imparted by her social worker about the challenging transition back to everyday life. The first hundred days post-transplant were particularly tough as she felt isolated from her family's ongoing life. However, the experience has given her a new perspective, emphasizing the importance of acknowledging and dealing with these emotional hurdles.The interview highlights the concept of paying it forward, which Beth embraced through organizing blood drives and bone marrow registry events. Her husband also became involved by signing up as a courier for the National Marrow Donor Program, (NMDP)  reflecting their deep commitment to giving back. There is also a tribute race car in the works, yet another way this family is raising awareness on and off the track. Beth's story underscores the collective effort required in the transplant journey, from medical professionals to supportive family and community members. Her reflections on gratitude, finding humor in difficult times, and the importance of small comforts, like warm blankets, offer valuable insights for others navigating similar experiences.Beth concludes with an inspiring note on the transformative power of her journey. She appreciates the profound changes it has brought to her life, stating she would choose her transplant life over her previous one despite the hardships. Her resilience and positivity are palpable, leaving listeners with a sense of hope and the importance of community support in overcoming life's toughest challenges.Resources:Beth's Bone Marrow Journey Facebook Page: https://www.facebook.com/profile.php?id=100077793195673NMDP (formerly Be The Match): 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/

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/

Phil discusses his diagnosis of diffuse aggressive B-cell non-Hodgkin's lymphoma and his reflections on dealing with cancer for the second time, emphasizing his attempts to put affairs in order and contemplate the significance of life and the possibility of an afterlife. Jackie shares her story of being diagnosed with leukemia at 17, undergoing a bone marrow transplant, and facing various long-term side effects and subsequent cancer diagnoses. The conversation also explores their attitudes towards treatment decisions, the importance of self-care, and the support they've received from their community. Throughout, both exhibit a strong sense of resilience, focusing on living in the present, the therapeutic value of creating art, and the idea of legacy and impact on others. 00:00 A Heartfelt Conversation on Cancer and Resilience 02:32 The Second Battle: Doubts and Reflections 13:35 Navigating Treatment Choices and Embracing Uncertainty 18:52 Exploring Faith and Spirituality Through Cancer Recovery 22:06 Reflecting on Life's Challenges and the Journey of Recovery 22:19 Embracing Retirement and Passing the Torch 23:33 The Essence of Recovery and Self-Care 27:22 Personal Growth and Future Aspirations 34:41 The Healing Power of Community Support and Spirituality 38:37 Navigating the Side Effects of Treatment and Embracing Change

When's the last time you asked for help?  This short episode touches on our interconnectedness and the importance that we all play in each other's lives, as well as a time-sensitive request:  Lauren's casting a net to help build a care support team for her friend undergoing a bone marrow transplant.  If you or anyone you know is available for a unique caregiving opportunity near Johns Hopkins Hospital in Baltimore for mid-April through mid-June 2024, whether it be a nurse, retiree, or someone simply with a big heart and a flexible schedule, please contact Lauren directly at lauren@laurensamay.com Any leads are greatly appreciated. You can connect with Lauren on Instagram via @lauren.samay and @mymourningroutinepodcast, on Facebook @lauren.samay.coaching or through www.laurensamay.com If you are tuning in and finding value in these episodes, please take a moment to rate and review My Mourning Routine on Apple Podcasts-- it means so much and helps make a bigger, connecting splash in the podcasting pond:  https://podcasts.apple.com/us/podcast/my-mourning-routine/id1654068541 Sign up for Lauren's newsletter here.

2023 ended with an exciting biotech breakthrough for sickle cell patients. A gene-editing therapy using the revolutionary CRISPR technology provides new hope and options for the nearly 100,000 Americans with sickle cell disease. In this episode, we talk with the company behind one of the life-changing therapies, CASGEVY, and speak with two advocates for sickle cell patients. Follow us on LinkedIn, X, Facebook and Instagram. Visit us at https://www.bio.org/

Featuring Christina Augustine and Dr. Alexander I. Ngwube, MD, this episode provides an comprehensive exploration on bone marrow transplant (BMT) for sickle cell disease, blending personal experiences with professional expertise. A huge thank you to Be the Match for Sponsoring this episode. For more information about Be the Match, visit: https://sicklecellconnect.com --- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support --- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support

A great week on The Nikki & Brie Show continues as USWNT soccer legend Mia Hamm joins them for an exceptional conversation that covers her career on the field, her perspective on being a mother, her work to raise awareness for bone marrow transplants and the special connection she has to the bone marrow transplant community. For years Nikki & Brie have been putting it out in the universe that they wanted to get Mia Hamm on the podcast. Growing up in Arizona and playing soccer, they both looked up to the USWNT that won multiple World Cups and Olympic Gold medals, and created a path of empowerment and achievement in life. Mia talks about the responsibility and opportunity that the team embraced, knowing that young eyes across the country were watching their every move, raising twin girls, filming a legendary Gatorade commercial with Michael Jordan and what his support meant, exhausting practices that tested her mental fortitude, and how she was introduced to the game of soccer, and the WWE superstar that used to throw her into a pool as a kid that went on to also have a Hall of Fame career. Mia also highlights the importance of her big brother Garrett, whom she admired greatly, who passed away in 1997 from complications following a bone marrow transplant (BMT) his family hoped could help cure aplastic anemia, a rare bone marrow disease he was battling at the time, which is why bone marrow transplant support and gave her a new mission in life to help other families, teaming up with Incyte to make sure they get the tools and information they need with a procedure that can have serious complications like Graft Versus Host Disease (GVHD). Mia closes out the episode with a special Inspiration & Affirmation that focuses on being present in a world that's full of distractions. For more on Mia's work with BMT and GVHD check out this link Find out more about bone marrow transplants at The Mia Hamm Foundation Follow Mia on Instagram Call Nikki & Brie at 833-GARCIA2 and leave a voicemail!Follow Nikki & Brie on Instagram and send Nikki & Brie a message on Threads!To watch exclusive videos of this week's episode, follow The Nikki & Brie Show on YouTube, Facebook, and TikTok!  

Sabrina of The Budding Optimist shares 7 steps to embracing change. This is part 2 of 2. Episode 2709: [Part 2] 7 Steps to Embracing Change Without Fear or Frustration by Sabrina of Budding Optimist Sabrina is a two-time Leukemia survivor, the recipient of a Bone Marrow Transplant, and a person living with a rare, progressive, and irreversible lung condition called Bronchiolitis Obliterans. But more importantly, she is a Foodie, a Traveller, a Health Enthusiast, and an Aspiring Writer. She is also what she calls a “Budding Optimist”. Her goal is to live a healthy life filled with an abundance of joy and optimism. The original post can be found here: https://buddingoptimist.com/embracing-change/ Visit Me Online at OLDPodcast.com  Interested in advertising on the show? Visit https://www.advertisecast.com/OptimalLivingDaily Learn more about your ad choices. Visit megaphone.fm/adchoices

Sabrina of The Budding Optimist shares 7 steps to embracing change. This is part 1 of 2. Episode 2708: [Part 1] 7 Steps to Embracing Change Without Fear or Frustration by Sabrina of Budding Optimist Sabrina is a two-time Leukemia survivor, the recipient of a Bone Marrow Transplant, and a person living with a rare, progressive, and irreversible lung condition called Bronchiolitis Obliterans. But more importantly, she is a Foodie, a Traveller, a Health Enthusiast, and an Aspiring Writer. She is also what she calls a “Budding Optimist”. Her goal is to live a healthy life filled with an abundance of joy and optimism. The original post can be found here: https://buddingoptimist.com/embracing-change/ Visit Me Online at OLDPodcast.com  Interested in advertising on the show? Visit https://www.advertisecast.com/OptimalLivingDaily Learn more about your ad choices. Visit megaphone.fm/adchoices