These podcast series educate patients, caregivers and health care professionals regarding important topics as they relate to bone marrow/stem cell transplant. In Season 1 (sponsored by Incyte Corporation), we focused on all things related to Chronic Graft Versus Host Disease, or cGVHD. Season 2 fe…
The National Bone Marrow Transplant Link
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 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 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 talk to Carly Cappozzo, a senior occupational therapist specializing in graft-versus-host disease (GVHD) rehabilitation at a major cancer hospital. Carly shares her unique approach to patient care, emphasizing the importance of holistic and personalized therapy that empowers patients to regain their independence and identity post-treatment.Carly explains her role as an occupational therapist, detailing how she helps patients achieve independence in everyday tasks and rediscover activities that give their lives meaning. Her methods include activity analysis, breaking down tasks to identify barriers, and creating strategies to overcome them. She highlights the need for patient-centered care, ensuring therapy aligns with each individual's goals and preferences.Carly discusses her work in GVHD rehabilitation, particularly focusing on the relationship between skin, fascia, muscle tightness, and the nervous system. She underscores the value of gentle, prolonged stretching and calming the nervous system to improve mobility and reduce stress. She also addresses cancer-related fatigue, comparing it to a depleted energy "bank account," and stresses the importance of prioritizing activities that bring joy while conserving energy for essential tasks.Practical solutions for ocular GVHD are explored, including leveraging technology's accessibility features like text magnification and screen readers. Carly advises tailoring daily routines to maximize engagement in meaningful activities and adapting tasks to accommodate physical limitations. She highlights the importance of movement over exercise, recommending gentle, natural activity to improve well-being.Carly emphasizes the critical role of caregivers in fostering patient independence. She advises caregivers to balance support with opportunities for patients to contribute to daily life, thus maintaining a sense of purpose. Carly also shares inspiring stories of patients overcoming significant physical and emotional challenges through therapy, demonstrating resilience and achieving a fulfilling quality of life.The conversation concludes with advice for survivors and caregivers to approach GVHD recovery as a marathon rather than a sprint, emphasizing patience, consistency, and a collaborative approach to health and wellness.More:Seeing AI App: https://www.microsoft.com/en-us/ai/seeing-aiGVHD 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 today's episode, we talk with Krista Wood, a registered nurse with the Cell Therapy and Transplant Program at Victoria General Hospital in Halifax, Nova Scotia (Canada). Krista shares her invaluable insights and experiences working with patients dealing with chronic graft-versus-host disease (GVHD), a common complication following stem cell transplants. Our discussion delves into the importance of communication, post-transplant care, and finding joy and purpose during survivorship.Krista emphasizes that early detection and treatment of GVHD are critical. She encourages patients to report any changes, no matter how minor they may seem, and reassures them that healthcare teams are there to help. This open communication is vital, as post-transplant life can be overwhelming with fears of relapse or complications. Ensuring patients have direct access to their care team can ease their anxieties and foster trust.Routine health checks, like blood work and pulmonary function tests, play a crucial role in monitoring potential complications. Krista explains the importance of tracking liver enzymes, bone density, and lung function to catch and address issues early. She underscores that post-transplant care goes beyond the transplant itself, extending to overall health maintenance, including routine screenings like mammograms, dental care, and colorectal exams.Reconnecting with life post-transplant is another important theme. Krista encourages patients to rediscover the activities they loved before their illness, whether it's returning to work, volunteering, or pursuing hobbies. Work and social engagement provide purpose and can aid emotional recovery. For those who can't return to work, finding alternative ways to contribute, such as volunteering with organizations like the Leukemia & Lymphoma Society or HealthTree, can offer fulfillment and connection. (Note: the National Bone Marrow Transplant Link (nbmtLINK) has a peer mentor program as well, email info@nbmtlink.org if you'd like to be a peer or need a peer mentor. )Preparing for transplant and understanding GVHD beforehand is crucial. While some patients prefer to know everything, others may only want the basics. Krista and her team provide consistent education in manageable increments to help patients absorb key information. She explains factors that increase the risk of GVHD, such as donor characteristics and patient preconditioning, and stresses the importance of entering the transplant process in the best possible physical shape.Krista also highlights the importance of addressing sensitive topics like sexual health, which many patients are reluctant to discuss. She brings up these issues proactively, ensuring patients feel supported and have access to necessary resources.Finally, Krista shares stories of hope, including patients who, despite long-term challenges, have regained a sense of normalcy and fulfillment. She reminds us that while every patient's journey is unique, resilience and adaptation are common threads in their recovery.This episode is a testament to the critical role nurses like Krista play in guiding patients through this complex medical journey, offering care, education, and encouragement every step of the way.More:Leukemia & Lymphoma Society: https://www.lls.orgHealthTree Foundation: https://www.healthtree.orgGVHD 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 Lisa Stewart, a nurse practitioner with more than 25 years of transplant nursing experience, currently working at the post-transplant BMT clinic at the Dana-Farber Brigham Cancer Center in Boston. Lisa provides invaluable insights into managing chronic and acute graft-versus-host disease (GVHD) and shares her expertise, stories, and advice for patients and caregivers navigating post-transplant life.Lisa describes her role in outpatient care, where the majority of her work focuses on managing chronic GVHD, a condition that is both a sign of a functioning immune system and a complex challenge. While mild GVHD can indicate that the transplant is effectively fighting diseases like leukemia or lymphoma, severe cases can lead to complications involving multiple organs. Lisa outlines the two major categories of GVHD: steroid-reactive and steroid-refractory, with the latter being particularly difficult to treat. Acute GVHD typically occurs within the first 100 days post-transplant and often impacts the skin, liver, or gut, whereas chronic GVHD can develop months or years later and affect a broader range of organs, including the eyes, mouth, lungs, and reproductive systems.Clinical trials have led to significant advancements in treatment, including drugs like Ruxolitinib and Rezurock, offering hope to patients who fail first-line steroid therapy. Lisa also highlights Axatilimab, a newer medication discussed at the 2023 ASH meeting, although its availability remains limited due to manufacturing challenges. Despite these breakthroughs, steroids remain the frontline treatment, though they often cause challenging side effects like hyperglycemia, insomnia, and weight gain.Lisa also emphasizes the critical role caregivers play in a patient's recovery, managing complex medication regimens and providing vital emotional and physical support. She notes that without strong support at home, a transplant may not be feasible, particularly in the crucial first six months post-transplant.The episode also touches on common post-transplant issues like oral GVHD, fatigue, and the importance of staying active. Lisa shares practical tips, such as using Dexamethasone rinses for oral GVHD and encouraging light activity to combat fatigue. She underscores the importance of early symptom reporting, especially for chronic GVHD, as prompt intervention can significantly improve outcomes.Lisa concludes with a heartfelt story of a young patient who faced severe complications, including acute respiratory failure and paralysis, but ultimately made a remarkable recovery, even regaining mobility and starting a family. Stories like his, Lisa says, are what keep healthcare providers inspired despite the challenges.We wrap up with a reminder about the resources available to patients and caregivers, encouraging early reporting of symptoms and proactive management. Lisa's wisdom and dedication shine through, offering hope and practical guidance for those navigating the complex world of post-transplant care.More:GVHD Alliance: https://www.gvhdalliance.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
Season 16 of Marrow Masters, Sponsored by Sanofi, will be released January 30, 2025. The National Bone Marrow Transplant Link, established in 1992, strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow transplant, from diagnosis through survivorship. Season 16 of our show will focus on the best tips for dealing with Chronic GVHD. Top notch health care professionals will share their compassion, best advice, insight and caregiving tips regarding chronic GVHD. This season will offer education, tried and true solutions, stories of hope and more. National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/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 of Marrow Masters, we hear the journey of married couple Dave and Laurie Brock, as they share their experience with CAR T-cell therapy— one Dave very recently underwent. The Brocks provide an inspiring and honest account of navigating this complex treatment process. Dave, diagnosed with multiple myeloma in 2015, had an eight-year remission following a stem cell transplant. When he relapsed earlier this year, his doctor, Dr. Abdullah at the University of Kansas Medical Center, recommended CAR T-cell therapy, which had just been FDA-approved for patients in his position. Dave recalls his surprise that what once felt like a “futuristic” option was now available and could be pursued immediately.As Dave began CAR T- cell therapy, he leaned on advice he received early in his treatment: maintain a positive attitude, be informed, and work closely with his healthcare team. Physical fitness played a crucial role in his journey, allowing him to hike and stay active, which he believes aided his recovery. However, the therapy wasn't without challenges. He experienced significant fatigue, developed Bell's palsy as a side effect, and had to constantly monitor for signs of neurotoxicity.Laurie is Dave's "care partner," not "care giver." And she describes the intensive nature of navigating CAR T- cell therapy. She monitored Dave around the clock, prepared their home with stringent health protocols, and managed the complexities of his medication and appointments. Laurie's commitment required self-sacrifice; she isolated from family and even stopped going to the gym to protect Dave from exposure to illness. However, she also found unexpected joy in the time spent alone with Dave, as they grew closer through shared activities and humor.Both Dave and Laurie emphasize gratitude—appreciating their medical team, the support of their community, and the positive outcomes of CAR T-cell therapy. Their care team was deeply invested in their success, with doctors even celebrating with them on day 31 when test results confirmed Dave was in remission. Dave reflects on how fortunate he feels for his proximity to the clinic and his medical staff's expertise, acknowledging the importance of clinical trials and the contributions of previous patients in advancing treatments like CAR T.The episode closes with Dave's reminder: we're all in this together, underscoring the value of community, support systems, and the role that clinical trials play in the ongoing advancements in cancer treatment. He also shares his gratitude for anyone who's participated in a clinical trial. Without them, he wouldn't have had the opportunity to undergo this cutting-edge treatment. This season is made possible thanks to our sponsors:Kite, a Gilead company: http://www.kitepharma.com/and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/Or visit our website at https://www.nbmtlink.org/
In this interview, we sit down with Dr. Hemant Murthy, a professor of medicine in the division of Hematology/Oncology at Mayo Clinic, to explore the groundbreaking potential of CAR T-cell therapy and the crucial role clinical trials play in advancing cancer treatments.Dr. Murthy begins by emphasizing the importance of clinical trials in hematology, reminding us that many of today's standard treatments—like oral medications for chronic myeloid leukemia or advanced therapies for multiple myeloma and acute myeloid leukemia—are the result of past clinical trials. These studies not only push boundaries but also provide a clearer future path for treating diseases.CAR T-cell therapy is a significant part of this evolving landscape. Initially viewed as a last resort for patients with limited life expectancy, CAR T- cell therapy has now become a transformative therapy, with trials showing such strong results that it's being used earlier in treatment regimens, sometimes even before other established procedures like bone marrow transplants. The therapy, which re-engineers a patient's own immune cells to fight cancer, has been particularly effective for conditions such as lymphoma and multiple myeloma. Dr. Murthy explains how this shift in timing and application has dramatically changed patient outcomes, allowing those once facing hospice care to now look forward to longer, more hopeful lives.Dr. Murthy also highlights the meticulous approval process for CAR T- cell therapies. He discusses how several CAR T products, such as axicabtagene ciloleucel and lisocabtagene maraleucel, have been approved for diseases like diffuse large B-cell lymphoma and multiple myeloma due to their success in clinical trials. Importantly, he notes that these treatments are continually evolving, and future trials may yield even better results for more patients.For patients interested in learning about clinical trials, Dr. Murthy stresses the importance of consulting with their oncologists. Trials are essential in driving the next wave of treatments, and they provide an opportunity to explore innovative therapies. He advises patients to ask about trial phases and the logistics involved, such as the number of study visits or the need to stay near treatment centers. Resources like clinicaltrials.gov can also help patients find reputable studies.Looking to the future, Dr. Murthy shares his excitement about emerging therapies, including cellular treatments for solid tumors like melanoma and sarcomas. He talks about innovative approaches like gene editing and the use of different immune cells, such as natural killer cells, to make treatments safer, faster, and more effective. As clinical trials continue to expand, they offer hope for addressing even more cancer types and improving patient care.In closing, Dr. Murthy reflects on how far cancer treatments have come and expresses optimism about the ongoing impact of clinical trials in shaping a brighter future for patients. He encourages patients to ask questions and stay engaged with their healthcare providers to explore all potential treatment options.More:ClinicalTrials.gov: https://clinicaltrials.govMayo Clinic Cancer Center: https://www.mayoclinic.org/departments-centers/cancer-centerThis season is made possible thanks to our sponsors:Kite, a Gilead company: http://www.kitepharma.com/and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/Or visit our website at https://www.nbmtlink.org/
In this podcast episode, we talk to Liz Muenks, a licensed psychologist and director of the Onco-Psychology Program at the University of Kansas Cancer Center. We discuss the psychosocial and emotional challenges faced by patients undergoing CAR T-cell therapy, a groundbreaking treatment for cancer, and how these experiences affect both patients and caregivers.Liz explains that patients typically enter CAR T-cell therapy after exhausting other treatment options, which leads to a heavy emotional burden. Many patients feel like they've "failed" previous treatments, a term that Liz finds problematic but acknowledges is often used. The pre-treatment phase is already filled with anxiety, depression, and fear. While some patients approach CAR T with hope and optimism, others carry a deep skepticism based on their past experiences. Liz notes that there are optimists, pessimists, and realists among patients, each bringing a different mindset to this journey.Liz highlights the societal pressure on cancer patients to maintain a positive attitude, which can add stress. She dispels the myth that a positive mindset is required to beat cancer, emphasizing that embracing all emotions, including fear and worry, is crucial to managing the cancer journey. While uncontrolled anxiety or depression can negatively impact outcomes, Liz reassures that patients can still succeed in their treatment even with emotional ups and downs.The conversation also touches on the unique side effects of CAR T-cell therapy, which differs from traditional treatments like bone marrow and stem cell transplants. While patients often feel relieved that the chemotherapy before CAR T is less intense, they are faced with neurological risks and the potential for serious side effects like cytokine release syndrome. However, these severe side effects affect a minority of patients.Caregivers, Liz stresses, play a vital role, especially as CAR T is increasingly being done on an outpatient basis. She advises caregivers to lean on their medical teams for support and never hesitate to ask questions. Caregivers often feel immense pressure, but Liz encourages them to recognize that they are not alone in this journey. Support networks include therapy groups, on line resources such as nbmtLINK.org (and many others) and on-call specialists , all available, offering caregivers support in sharing their burdens and finding reputable resources and guidance.Finally, Liz discusses the psychological challenges that linger after CAR T-cell therapy, especially the anxiety of cancer recurrence. Many patients struggle to move forward, constantly worrying about how much time they have before the disease returns. While some can compartmentalize these fears, others need ongoing psychological support. Liz also shares stories of patients who were initially hesitant about CAR T due to difficult past treatments but later experienced positive outcomes, reflecting the progress being made in this groundbreaking cancer therapy.This season is made possible thanks to our sponsors:Kite, a Gilead company: http://www.kitepharma.com/and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/Or visit our website at https://www.nbmtlink.org/
(Disclaimer: This episode contains advice on nutrition and lifestyle. Always consult your health care team regarding your personal circumstances).In this episode, we speak with Terena from Tampa, Florida, about her journey with CAR T-cell therapy, covering her experiences from diagnosis through recovery and remission. Diagnosed with mantle cell lymphoma, a type of non-Hodgkin's lymphoma, in September 2019, Terena endured years of misdiagnosis as her initial symptoms, such as severe hot flashes and night sweats, were attributed to menopause. It wasn't until a bone marrow biopsy that she was correctly diagnosed.Following her diagnosis, Terena underwent extensive testing, including specialized genetic tests like FoundationOne Heme and clonoSEQ, which helped tailor her treatment plan. She started on a combination therapy of Revlimid and rituximab before transitioning to CAR T-cell therapy in December 2020. She shares how the preparation for CAR T involved rigorous health screenings, including mental health assessments and apheresis, to collect her T cells.Terena details the intensive hospital stay during CAR T, where she faced several challenging side effects like cytokine release syndrome, neurotoxicity, and significant weight loss due to radiation-induced nausea. Despite these challenges, she avoided some severe complications such as seizures or viral reactivations, thanks to preemptive treatments and vigilant care. Her remission came three months post-treatment, a milestone that was both a relief and a testament to the effectiveness of the therapy.The cost of CAR T therapy was staggering, with an itemized hospital bill exceeding a million dollars. Fortunately, her insurance (including Medicare) covered a significant portion, though she emphasizes the importance of being financially prepared for such high medical expenses.Post-remission, Terena has made significant lifestyle changes to support her health. She follows a strict anti-inflammatory diet, avoiding GMOs, processed foods, and conventional dairy and meat products. She shares her regimen of juicing, incorporating nutrient-rich foods like organic berries, avocados, and cruciferous vegetables. Additionally, she has overhauled her home environment, switching to non-toxic cleaning products and cosmetics, using water and air filters, and incorporating wellness practices like infrared sauna therapy and regular exercise.Terena's commitment to reducing environmental toxins extends to every aspect of her life. She no longer uses products with harmful chemicals, such as nail polish or hair dye, and relies on digital tools to evaluate the safety of her food and personal care products. Her integrative health approach, combining conventional and holistic practices, plays a crucial role in maintaining her well-being.Her story is not only about overcoming physical challenges but also about the emotional and logistical aspects of undergoing such intensive treatment. From pre-paying bills and preparing meals in advance to relying on friends and family for transportation during her recovery, Terena's experience highlights the need for a strong support system. Her openness and detailed sharing of her journey are bound to help others navigating similar paths.Links: Gluten Free Scanner App: https://glutenfreescanner.app/EWG's "Clean Fifteen" List: https://www.ewg.org/foodnews/clean-fifteen.phpEWG's "Dirty Dozen" List: https://www.ewg.org/foodnews/full-list.phpFoundationOne Heme - foundationmedicine.comclonoSEQ - clonoseq.comThis season is made possible thanks to our sponsors:Kite, a Gilead company: http://www.kitepharma.com/and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/Or visit our website at https://www.nbmtlink.org/
In this episode, we talk with Dr. Hassan Alkhateeb, a hematologist from the Mayo Clinic Transplant Center, about CAR T-cell therapy. Dr. Alkhateeb walks us through the basics of this groundbreaking immunotherapy and how it has evolved as a treatment option for various cancers. CAR T-cell therapy involves collecting a patient's T cells and re-engineering them in the lab to target and destroy cancer cells. This therapy has shown promise in treating blood cancers like B-cell acute lymphoblastic leukemia (ALL), non-Hodgkin lymphoma, multiple myeloma, and even solid tumors like synovial sarcoma.The origins of CAR T therapy date back to 2011, with the first FDA-approved product arriving in 2017. Since then, the therapy has rapidly expanded to treat more conditions. Dr. Alkhateeb explains that while CAR T is often seen as a last-resort treatment, especially in cases where patients have not responded to other therapies, early referral to CAR T specialists is becoming more common. This shift can improve outcomes, as earlier intervention allows for better preparation and potentially more effective treatment.He outlines the evaluation process for CAR T therapy, which is similar to that for bone marrow transplants but focuses on assessing the patient's overall health and suitability for cell collection rather than matching a donor. The cells are then modified in a lab, a process that typically takes two to three weeks. Dr. Alkhateeb notes that manufacturing failures are rare, affecting about 3% of cases.Post-treatment, patients must be monitored closely for side effects such as drops in blood counts, risk of infections, and specific complications like cytokine release syndrome (CRS) and neurotoxicity. These side effects can be severe but are generally manageable with the right care. Caregivers play a crucial role in this process, especially since patients need to stay near the treatment center for an extended period.Dr. Alkhateeb also shares inspiring success stories, including one patient with a particularly challenging form of leukemia who achieved remission and is now back to living a normal life. This highlights the life-saving potential of CAR T therapy and its impact on patients who otherwise have limited options.As we conclude, Dr. Alkhateeb emphasizes the importance of early referrals to specialized centers with experience in CAR T therapy. He expresses optimism about the future of cancer treatment, noting that advancements in this field are providing new hope for patients and their families. We are grateful for his insights and encourage listeners to stay informed about emerging therapies like CAR T, which are transforming the landscape of cancer care.Links:Mayo Clinic Transplant Center: https://www.mayoclinic.org/departments-centers/transplant-centerCAR T-Cell Therapy Information: https://www.cancer.gov/about-cancer/treatment/types/immunotherapy/car-t-cellFDA Approval Information on CAR T Therapies: https://www.fda.gov/news-events/press-announcements/fda-approves-first-car-t-cell-therapyThis season is made possible thanks to our sponsors:Kite, a Gilead company: http://www.kitepharma.com/and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/Or visit our website at https://www.nbmtlink.org/
Today we interview Lori Dear, a registered nurse and transplant coordinator in the adult Blood & Marrow Transplant Program at Corewell Health in Grand Rapids, Michigan. Lori shares her deep insights into the CAR T-cell therapy process, a groundbreaking treatment for certain cancers, focusing on the patient experience and the critical role of caregivers.Lori explains that CAR T-cell therapy is highly personalized, with no "cookie-cutter" approach. A diverse interdisciplinary team, including physicians, nurses, pharmacists, and various specialists, collaborates to guide patients through the process, from eligibility testing to treatment and recovery. She stresses the importance of preparing for the CAR T process by researching the therapy and arranging for a trustworthy caregiver, who will play a crucial role in managing care for up to 12 weeks after infusion. Lori points out that caregivers often include spouses or close friends, but emphasizes that anyone chosen should be reliable and available 24/7 for an extended period.Eligibility for CAR T therapy involves various health screenings, including heart, lung, and kidney function tests, to ensure a patient's fitness for the treatment. The goal is to minimize risks and optimize outcomes. Lori also discusses the importance of being near the treatment center, typically within one to two hours, particularly during the critical post-infusion period.Side effects like Cytokine Release Syndrome (CRS) and ICANS (neurotoxicity) are potential complications, and caregivers play a vital role in recognizing early symptoms, such as fever or cognitive changes. Lori advises patients and caregivers to stay vigilant and report even subtle signs of illness to the medical team. She reassures that the healthcare team is ready to act quickly in the event of complications, underscoring the importance of a collaborative relationship between caregivers, patients, and staff.Lori also addresses secondary concerns, such as financial toxicity, explaining that financial coordinators work with patients to navigate insurance coverage and secure additional assistance if needed. She mentions the psychological strain patients may experience, emphasizing the normality of feeling overwhelmed and the value of a strong support network.As the episode wraps up, Lori shares a heartwarming story of a patient who, after multiple treatments, including a transplant, faced discouraging PET scan results. With the center and Lori's support and encouragement to explore CAR T therapy, the patient proceeded with the treatment and, despite some complications, has celebrated three more Christmases with his grandchildren. This story encapsulates the hope and life-changing potential of CAR T- cell therapy.This season is made possible thanks to our sponsors:Kite, a Gilead company: http://www.kitepharma.com/and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/ Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/Or visit our website at https://www.nbmtlink.org/
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/
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/
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 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/
Dr. Doris Ponce from Memorial Sloan Kettering Cancer Center delves into atypical presentations of chronic graft-versus-host disease (cGVHD). As an associate member, co-chair of the Center for Hematologic Malignancies, and director of the Graft-Versus-Host Disease Program, Dr. Ponce provides an in-depth understanding of this complex condition.Dr. Ponce emphasizes the diverse symptoms of GVHD that often overlap with other conditions, making diagnosis challenging. She outlines the eight organs typically affected by GVHD: skin, mouth, eyes, musculoskeletal, genitourinary, lungs, liver, and gastrointestinal tract. However, she highlights that GVHD can also present atypically in organs such as the kidneys, nervous system, muscles, heart, and pancreas, causing symptoms such as serositis, effusions, nephrotic syndrome, and autoimmune disorders like vitiligo.Atypical presentations of GVHD are rare and require exclusion of other conditions such as drug side effects or infections before diagnosis. Dr. Ponce stresses the importance of patients communicating any new or unusual symptoms with their clinicians, as these might not initially seem connected to GVHD.Focusing on skin-related GVHD, Dr. Ponce describes common and atypical manifestations, including tight skin (sclerodermatous changes), pigmentation loss, dryness, and psoriasis-like appearances. Treatment varies but often involves topical steroids or immune suppression tailored to individual symptoms. For daily skincare, she advises avoiding frequent hot showers, using lukewarm water, and selecting gentle, fragrance-free products to prevent skin irritation.Regarding sun exposure, Dr. Ponce recommends using broad-spectrum sunscreen with SPF 30 or higher, and wearing protective clothing to prevent rashes exacerbated by sunlight. She also discusses the use of chemical and mineral sunscreens, noting that mineral sunscreens, despite being thicker, are better suited for sensitive skin.Peggy and Dr. Ponce discuss the Long Good Feel Better program that the American Cancer Society provides. For patients wanting to wear makeup, Dr. Ponce suggests choosing products designed for sensitive skin, avoiding those with harsh ingredients or multiple components, and replacing makeup regularly to prevent contamination. She also warns against using organic or preservative-free makeup due to infection risks.Haircare after GVHD often involves managing hair loss and changes in texture. Dr. Ponce advises infrequent washing, using gentle products, and considering supplements like biotin. For wigs, she cautions against those requiring glue and suggests alternatives like clip-on wigs or scarves. Hair dyeing is permissible with ammonia-free products.Nail care post-transplant includes using nail hardeners and avoiding acrylic nails. Dr. Ponce also emphasizes checking for underlying issues like vitamin deficiencies that may affect nail health.In closing, Dr. Ponce highlights the holistic approach to patient care at Memorial Sloan Kettering Cancer Center, addressing both medical and psychological aspects to support patients' overall well-being. She encourages patients to communicate any concerns, as seemingly minor symptoms might significantly impact their health and recovery. Dr. Ponce's dedication to improving patients' lives extends beyond treating their conditions, fostering confidence and quality of life throughout their recovery journey.More:Memorial Sloan Kettering Cancer Center's Tips for Managing GVHD (created by Dr. Ponce and dermatologist) Dr. Alina Markova:https://www.mskcc.org/cancer-care/patient-education/tips-managing-graft-versus-host-disease-gvhdAmerican Cancer Society's Look Good Feel Better Program: https://lookgoodfeelbetter.org/Memorial Sloan Kettering Cancer Center Website: https://www.mskcc.org/Sally Hansen Nail Hardener: https://www.sallyhansen.com/en-us/nail-care/nail-care/mega-strength-hardenerSurvivor recommended clothing brands that have SPF/UPF clothing:Coolibar: https://www.coolibar.com/Columbia: https://www.columbia.com/c/sun-protection/Baleaf: https://www.baleaf.com/collections/upf50This 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/
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/
In this episode, we speak with Brigham and Women's Hospital and Dana Farber Cancer Institute's Dr. Hermioni "Hermi" Amonoo, an esteemed psychiatrist, psychosocial oncologist, and associate professor at Harvard Medical School. Our discussion centers on the psychological distress associated with graft versus host disease (GVHD) following a bone marrow stem cell transplant. Dr. Amonoo sheds light on the significant psychological challenges patients with GVHD face, noting that approximately 50% experience clinically significant depression, and about a third suffer from anxiety. This psychological distress permeates various aspects of daily life, affecting routines, relationships, and social roles.Dr. Amonoo uses a powerful analogy to describe psychological well-being, likening it to a toolbox filled with various tools and equipment essential for managing distress. Key components of this toolbox include psychotherapeutic interventions, health behaviors such as good nutrition and physical activity, medication when necessary, and professional help from specialty mental health clinicians. Social support and meaningful relationships also play a crucial role in enhancing wellbeing. Peer support, for instance, can offer valuable lived experiences and tips for thriving despite the challenges posed by GVHD.We also delve into the importance of the clinical team in managing cGVHD. The clinical team helps patients understand the disease, manage symptoms, and connect with resources. Dr. Amonoo emphasizes the importance of patients communicating openly with their clinical team, urging them not to hesitate in asking questions or expressing concerns about new symptoms.Pacing oneself is another critical aspect discussed. GVHD is not a static condition, and symptoms can evolve over time. Patients should give themselves grace, avoid overexertion, and maintain a sustainable pace to manage their energy levels effectively. Dr. Amonoo compares this to running a marathon, where pacing is essential to avoid burnout.Caregivers, who play a vital role in the patient's journey, must also prioritize their own well being. Dr. Amonoo stresses that caregiver well being directly impacts patient well being, encouraging caregivers to practice self-care and seek help when needed. Communication between caregivers and patients is crucial, especially as relationships and priorities may evolve during the recovery journey.As we conclude, Dr. Amonoo offers final advice to listeners: don't worry alone. Leverage your clinical team and support networks to navigate the challenges of recovery. This collaborative approach can significantly enhance the quality of life for both patients and caregivers.More:GVHD Upside Down Facebook Group: https://www.facebook.com/groups/gvhdupsidedownElephants and Tea: https://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/
Season 14 of the Marrow Masters podcast produced by the National Bone Marrow Transplant Link will be out soon, focusing on the parts of chronic graft versus host disease we don't often talk about. We'll cover male and female sexuality, and atypical presentations of chronic GVHD. We'll share a patient and caregiver perspective related to chronic GVHD and take a deep dive into the psychosocial and emotional struggles of those with this rare and sometimes debilitating disease.Guests include Dr. Doris Ponce and Dr. Jose Flores Ramirez of Memorial Sloan Kettering Cancer Center in New York, Dr. Hermioni "Hermi" Amonoo of Dana Farber Cancer Institute in Boston, and Dr. Oluwatosin Goje of Cleveland Clinic. We also speak with JR Brandt of Montana, an inspiring ALL Survivor, and Angie Giallourakis, caregiver and founder of Elephants and Tea.Season 14 of the Marrow Masters podcast will offer survivors insight, compassion, and answers to infrequently discussed subjects. The Marrow Masters podcast is produced by the National Bone Marrow Transplant Link and sponsored this season by Incyte and Syndax. Look for all six episodes coming soon on Apple, Spotify, YouTube, or wherever you're listening right now.And for more, visit the National Bone Marrow Transplant Link at nbmtlink.org or follow the link below. Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
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/
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/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/
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/
In this episode we interview Heather Knutson, a registered dietitian from the Leukemia & Lymphoma Society (LLS). Heather shares invaluable advice on nutrition management post-transplant, emphasizing the critical role of caregivers in the dietary adjustments necessary during this period.We start by addressing the challenges that both survivors and caregivers face when transitioning back home. Heather points out the importance of preparation before the survivor arrives home, suggesting that caregivers can ease the process by shopping in advance and preparing meals that can be easily accessed and consumed. She stresses the utility of having ready-to-eat and easy-to-prepare meals and snacks available to accommodate the fatigue that is common in survivors.A significant portion of the discussion revolves around the evolving dynamics between caregivers and survivors. Heather advises on strategies to mitigate stress and potential strain on relationships, suggesting practical tools like setting reminders for meals and medications, and using apps like the LLS Health Manager to coordinate care and dietary tracking.Heather also dives into the specific nutritional needs of survivors, highlighting the increased protein requirements post-transplant and the importance of balanced, nutritious meals to aid in survivorship. She provides tips for ensuring safety in food preparation and handling, particularly for survivors with compromised immune systems.The conversation further explores the emotional and logistical support that can be provided by friends and family, such as organizing meal trains or offering help with household chores, to lessen the burden on caregivers.As we wrap up, Heather touches on the broader FREE services provided by LLS, including one-on-one nutrition consultations and meal planning support, aimed at managing side effects and improving the quality of life for survivors and their families.This episode offers a comprehensive look at the intersection of caregiving, nutrition, and survivorship in the context of post-transplant recovery, providing actionable advice and emphasizing the power of thoughtful, well-coordinated care.Resources:LLS Phone Number: 877-467-1936 LLS Website: https://www.lls.org/LLS Nutrition Website: llsnutrition.orgLLS Health Manager App: https://www.lls.org/article/lls-health-manager-app-available-nowFairlife Product Website: https://fairlife.com/Survivor Gregory Proctor's book Faith, Strength, and Courage: https://www.amazon.com/FAITH-STRENGTH-COURAGE-Overcoming-Adversity/dp/760919834XFood Safety Podcast Episode with Sue Hill: https://marrowmasters.simplecast.com/episodes/sue-hillNational 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 this episode, we talk with Rachael Sommer, a dedicated mother and caregiver from Cleveland, Ohio. Rachael shares the journey of her daughter Maddie, who was diagnosed with Hepatosplenic T-cell Lymphoma in October 2023, after several months of mysterious symptoms. Treated at Nationwide Children's Hospital in Columbus, Maddie's condition has profoundly impacted their lives.Rachael recounts their initial stay at the Ronald McDonald House post-diagnosis, highlighting the physical and emotional changes Maddie experienced. Maddie's extreme fatigue and breathlessness were particularly challenging, and Rachael emphasizes the importance of adjusting to a "new normal" while staying in constant communication with doctors. Rachael found solace in the Ronald McDonald House's facilities, specifically the fitness room, which helped her manage her own stress.The conversation shifts to the emotional toll on Maddie, who struggled with isolation from friends and the mental burden of not being able to participate in normal activities. Despite the support of friends and thoughtful gestures like sending cards, nothing could replace the physical presence of her peers. Rachael's creativity shone through when she set up a Google camera to allow Maddie to see her cats, Binks and Leon, while they were away.Rachael discusses the importance of recognizing and respecting individual emotional needs. Maddie's withdrawal from activities she once enjoyed, like listening to music, was particularly hard for Rachael, who feared losing her daughter's spirited personality. Eventually, Maddie slowly began to regain her sarcasm and interactions with her younger brother, Ezekiel, signaling a return to her usual self.The financial strain of Maddie's illness is another significant aspect of their journey. Rachael praises the support from various organizations, including Carrie's Cause, Fight Like A Dozer, and the Leukemia & Lymphoma Society, which provided crucial financial aid. This support allowed Rachael to focus on Maddie's care without the added burden of financial stress.Rachael also shares her career transition to consulting, driven by the need for greater flexibility to support her family. Her faith in God has been a cornerstone throughout this journey, providing spiritual strength and community support.Finally, Rachael reflects on the importance of savoring small moments of joy amidst the challenges. She encourages other caregivers to focus on what truly matters, finding moments of normalcy and joy, and maintaining hope and strength for their loved ones.Resources:Nationwide Children's Hospital, Columbus, Ohio: https://www.nationwidechildrens.org/Fight Like a Dozer: https://www.fightlikeadozer.org/Leukemia & Lymphoma Society (LLS): https://lls.org/NMDP (formerly Be The Match): https://bethematch.org/The Bible Recap: https://www.thebiblerecap.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/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/
Our 13th season of the Marrow Masters podcast, produced by the National Bone Marrow Transplant Link, is out June 1, 2024. This season will focus on side effects of bone marrow and stem cell transplant, including GVHD. As always, you'll hear expert advice from professionals. You'll hear from patients who are open and honest about their experiences. Caregivers are also a key part of the journey, who also must take care of themselves physically, mentally, and for some, spiritually.The Marrow Masters podcast is produced by the National Bone Marrow Transplant Link and sponsored this season by Sanofi. Look for all six episodes June 1 on Apple, Spotify, YouTube or wherever you're listening right now. And for more, visit the National Bone Marrow Transplant Link, nbmtlink.org or follow the link below. Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**Ailey Armstrong, MSW, LICSW is a licensed clinical oncology social worker at Fred Hutchinson Cancer Center in Seattle. Today, she shares her insights on transitioning home post-transplant. She emphasizes the importance of continued caregiving support and suggests patients assess their needs in various aspects like medication management, meals, and transportation. Ailey advises making a list of needs and identifying which can be managed independently and which require external support, like arranging rides to medical appointments.Ailey highlights the role of social workers and patient navigators in providing resources and support, including financial assistance and help in returning to work. She also encourages tapping into a broader network beyond the core caregiver team, involving neighbors, church members, and extended family for support.On the emotional side, it's normal to feel a range of emotions from relief to anxiety and fear. The transition brings concerns about managing without the transplant team, handling post-transplant symptoms, and adapting to home life. She addresses the feelings of frustration, anger, and grief that stem from changes in lifestyle and identity post-transplant.To manage these emotions, Ailey recommends acknowledging and processing them rather than avoiding them. She suggests practical strategies like using lists, calendars, and apps to manage medications and appointments. Emphasizing the importance of staying present, she introduces the "dropping anchor" exercise to ground oneself in the present, focusing on immediate sensations and surroundings.Ailey stresses the importance of open communication with medical teams post-discharge, ensuring patients have all necessary contact information. She discusses the normality of mixed emotions upon returning home and the need for time to readjust to family dynamics and home responsibilities.Delving deeper into psychosocial support, Ailey advises discussing mood and sleep changes with medical providers, as these are treatable. She emphasizes the significance of self-compassion and kindness, urging patients to treat themselves as they would a dear friend. Additionally, she suggests having structured daily routines incorporating essential activities and enjoyable tasks to provide a sense of normalcy and control.In conclusion, Ailey underscores that difficult days are inevitable and recommends focusing on wellness. She advises preparing a list of activities and thoughts that induce calmness. Her final message emphasizes self-compassion, encouraging patients to treat themselves with the same kindness and patience they would offer to a loved one.More:Medisafe App for prescription management: https://www.medisafe.com/National Suicide and Crisis Hotline: 988 (three digit phone number)Book: It's OK That You're Not OK, by Megan Devine on Amazon:https://www.amazon.com/Its-OK-That-Youre-Not-OK-audiobook/dp/B075QP5SGH/Book: When Life Hits Hard, by Russ Harris: https://www.amazon.com/When-Life-Hits-Hard-Acceptance/dp/1684039010Book: The Cancer Companion: How to Navigate Your Way from Diagnosis to Treatment and Beyond, by Dr. Toni Lindsay (Parts 2 and 4 in particular): https://www.amazon.com/Cancer-Companion-Navigate-Diagnosis-Treatment/dp/0369366956Other ResourcesNational 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/
**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**In today's episode of our podcast, we had the privilege of speaking with Gregory Proctor, a 53-year-old multiple myeloma survivor from San Antonio, Texas. Gregory's story is a testament to resilience and hope, as he details his journey through a challenging battle with cancer, starting from his diagnosis in July 2022, to his stem cell transplant, and his ongoing recovery. Gregory shares the shock and fear he experienced when first diagnosed, particularly when advised to "get his affairs in order." He describes the mental and emotional toll of dealing with such a diagnosis, emphasizing the importance of mental strength and determination in facing the disease. His story took a dramatic turn with his return to the hospital just 14 hours after being discharged, due to a dangerously high fever. This event marked the beginning of a challenging path to recovery, filled with physical weakness and stringent precautions to protect his compromised immune system.A significant part of Gregory's conversation focuses on the emotional challenges of coping with cancer. He talks about the initial period of depression and the process of accepting his new life and journey. This acceptance was crucial in shifting his mindset from despair to determination and finding a renewed sense of purpose.Financial toxicity was another critical topic Gregory touches upon. He sheds light on the staggering costs of cancer treatment and the importance of understanding insurance policies and seeking additional resources. His experience highlights the often-overlooked financial burden of battling cancer, which can be as devastating as the disease itself.Gregory also discussed the social isolation he experienced, exacerbated by the pandemic and his condition. He highlighted the changes he had to make in his daily routine, like visiting grocery stores during low-peak hours and carefully vetting his social interactions to avoid infections.On a positive note, Gregory spoke about regaining his strength and the incremental progress he made in his physical recovery. He emphasized the mental aspect of this journey, pushing boundaries to rebuild his strength gradually. His story is inspiring, showing that persistence and small, consistent efforts can lead to significant improvements over time.Gregory's approach to medication management was unconventional yet effective for him. He advocated for a treatment plan that made sense to him and allowed him to maintain some normalcy in his life. This part of the conversation underscored the importance of patient advocacy and being an active participant in one's treatment plan.As for his current life, Gregory is channeling his experiences into positive endeavors. He just published his book, titled Faith, Strength, and Courage, and is actively involved in speaking engagements and consultancy work. His story is a beacon of hope for many, illustrating how one can turn adversity into an opportunity to inspire and help others.Gregory concluded the podcast with valuable advice for those facing tough days. He stressed the importance of never giving up, finding strength in faith, and realizing that you're not alone in your journey. His message is clear: cancer may be a part of your life, but it doesn't define your entire existence.Greg's Book: Faith, Strength, and Courage on Amazon: https://www.amazon.com/FAITH-STRENGTH-COURAGE-Overcoming-Adversity/dp/760919834X/Other ResourcesNational 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/
**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**Today we welcome Diane Raab, a remarkable survivor of multiple myeloma and a licensed clinical social worker from Cheboygan, Michigan. Diane shares her personal journey through the challenging path of cancer treatment, sprinkling her narrative with both professional insights and deeply personal experiences.Diane's story begins with the diagnosis of multiple myeloma following persistent back pain. She recounts the rigorous process of diagnosis, which led to seven months of chemotherapy in preparation for a stem cell transplant. She remembers the steroids turned her into an 'Energizer Bunny,' enhancing her productivity during treatment.The focus then shifts to her transplant experience at the University of Michigan. Diane praises the comprehensive and detailed guide provided by the hospital, which helped alleviate much of her anxiety. She describes the fascinating process of stem cell harvesting and the convenience of using a port for medical procedures. However, the journey was not without its hardships, as Diane lost her hair due to the intensive chemotherapy, a side effect handled with grace and humor.Post-transplant, Diane faced numerous challenges in adjusting to everyday life, from being in a highly protected hospital environment to navigating the risks of infection at home. She had to adopt new hygiene practices, including daily showers with clean towels and washcloths, and careful food preparation to avoid infection risks. Diane also shares the emotional toll of not being able to socialize freely and the adjustments she made to stay connected with friends and family.Peggy and Diane delve into the physical changes Diane experienced after her transplant, particularly the fatigue and the need to listen to her body's demands for rest. Diane also touches on the mental aspects of coping with cancer, emphasizing the importance of avoiding negative online forums and focusing on reputable sources for information.Diane candidly discusses the challenges of acknowledging her cancer and the psychological impact of the diagnosis. She stresses the importance of therapy and talking about one's experiences, sharing personal anecdotes that highlight the therapeutic value of open communication.As the episode concludes, Diane offers invaluable advice for others going through similar experiences. She emphasizes the importance of following medical guidance, staying safe, and finding value in everyday life, relationships, and the simple things. Her story is a testament to resilience, adaptability, and the power of a positive outlook in the face of adversity.Other Resources:National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/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/
**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**In the podcast, Peggy welcomes Sue Hill, a registered dietitian at Henry Ford Health Cancer in Detroit, to discuss food safety and nutrition for post-transplant patients. Sue emphasizes the importance of following guidelines by the Academy of Nutrition and Dietetics to prevent foodborne illnesses, as transplant patients have suppressed immune systems. She provides detailed advice on safe food handling, stressing the need to keep hot foods hot and cold foods cold, and the importance of storing foods at correct temperatures to prevent bacterial growth.Sue advises on meat handling, recommending thawing meat in the refrigerator and cooking it thoroughly, especially for transplant patients. She underscores the necessity of properly handling and cooking eggs, as well as ensuring fresh fruits and vegetables are cleaned correctly. A specific tip is to use a vinegar-water solution for cleaning produce. For post-transplant patients, Sue suggests avoiding pre-cut fruits and vegetables from stores and opting for whole, washable, and peelable items instead.The conversation also covers the handling of cooked meals by friends or family, where Sue recommends preparing food in the patient's kitchen when possible to ensure safe food practices. She also discusses the importance of maintaining proper food temperatures during transportation and reheating.Regarding vitamins, minerals, and probiotics, Sue advises consulting with healthcare teams before adding supplements, as they monitor patients for specific needs. She highlights the value of natural food sources like Greek yogurt for probiotics.Sue also touches on hydration, suggesting safe water sources and recommending products like Pedialyte for electrolytes. For sugar intake, she clarifies misconceptions, advocating for healthier carbohydrate choices and warning against simple sugars. Additionally, Sue advises against alcohol consumption post-transplant due to its impact on the liver, which is already burdened by medications and chemotherapy.Lastly, Sue offers tips for managing low appetite and fatigue days, suggesting simple, familiar foods and staying hydrated. She encourages patients to inform their healthcare team if sluggishness persists. Sue concludes with a positive note on the progress in post-transplant patient care and outcomes.FDA Safe Food Handling Guidelines: https://www.fda.gov/food/buy-store-serve-safe-food/safe-food-handlingBananatrol Plus Prebiotic:https://www.trybanatrol.com/Other Resources:National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/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/
**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**In today's episode, we had the privilege of speaking with Alan Katz, a Massachusetts resident and a survivor of Acute Myeloid Leukemia (AML). Alan's journey through his diagnosis, treatment, and life post-transplant is both inspiring and enlightening. He shares his experience of battling the disease with a robust support system, offering hope and encouragement to those facing similar challenges.Alan's story began with unusual health symptoms that surfaced in 2019, eventually leading to an unexpected AML diagnosis in November 2020. He recounts the various medical anomalies he encountered, including mono, vitreous detachment, back issues, and a case of poison ivy, which collectively hinted at underlying health problems. This series of events culminated in an orthopedic visit, where an MRI revealed abnormalities in his bone marrow, prompting urgent cancer treatment.The swift pace of his diagnosis and treatment left little time for Alan to process the situation. He underwent a bone marrow transplant after finding a match through The Gift of Life, a bone marrow registry associated with Be The Match. This organization played a pivotal role in his journey, especially given the unique challenges faced by individuals of Ashkenazic Jewish descent in finding compatible donors. Since then, more Jewish individuals are on the registry, but Alan is working to improve the numbers for currently underserved communities.Alan's transplant, a significant milestone in his recovery, was celebrated as his "re-birthday". However, his battle didn't end there. He faced a relapse 97 days post-transplant, which required further intensive treatment, including chemotherapy and a donor lymphocyte infusion. This challenging period underscored the critical role of a strong support system. Alan emphasizes the importance of support from family and friends, particularly highlighting the unwavering care provided by his wife, who became his primary caregiver.Throughout the podcast, Alan discusses the physical and mental toll of AML treatment and recovery. He speaks candidly about the daily struggles, from dealing with fatigue and following a strict medication regimen to the mental grind of enduring a long recovery process. He shares practical advice and coping mechanisms, such as living one day at a time and never giving up, which helped him navigate the journey.Volunteering and advocacy became integral parts of Alan's life post-recovery. He engages in various activities, including mentoring AML patients, organizing fundraising events, and promoting the importance of diverse bone marrow registries. His efforts aim to inspire, educate, and support others facing similar battles.Alan's story is not just about surviving a life-threatening illness but also about the transformative power of human resilience, community support, and the importance of giving back. His journey from diagnosis to recovery and advocacy offers valuable insights and hope to those affected by AML and other challenging health conditions.Gift of Life Bone Marrow Registry: https://www.giftoflife.org/Be the Match Website: https://bethematch.org/Book: Between Two Kingdoms: A Memoir of a Life Interrupted: https://www.amazon.com/Between-Two-Kingdoms-Memoir-Interrupted/dp/B08BTMJ2RGOther Resources:National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/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/
**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**In this podcast, Peggy converses with Leila Zengel, who shares her family's journey and challenges following her 10 year-old daughter Julie's bone marrow transplant. Julie, diagnosed with (refractory) Ph-like ALL in January 2018, underwent a transplant in June 2018 at the Children's Hospital of Philadelphia (CHOP) with her brother Jacob as her donor. Leila, a former school counselor and educator, delves into the complexities of transitioning to a full-time caregiver role for her daughter.The conversation begins with Julie's diagnosis and the subsequent need for a transplant, highlighting the difficulties in finding effective treatment. Leila describes her shift from a professional career to focusing entirely on Julie's care, emphasizing the drastic change in their family life. The process was challenging, as Julie did not respond well to initial treatments, leading to the critical decision for a transplant.Leila shares the emotional and logistical challenges faced during the post-transplant phase, particularly the adjustments required when returning home. Living two hours away from the hospital posed additional difficulties. She speaks about the nuances of balancing care for Julie while managing the rest of the family, including her son Jacob. Leila's story is a deep dive into the realities of caregiving, from handling the medical complexities to the emotional toll on the family.Leila talks about the importance of self-care for caregivers. Leila stresses the need for moments of rest and relaxation amidst the demanding role of caring for a child with a serious medical condition. She talks about the value of simple activities like puzzles and reading, which provided her with much-needed respite.Leila also discusses the unexpected medical challenges that emerged post-transplant, such as chronic graft-versus-host disease. Despite these hurdles, Julie's gradual recovery is a testament to the resilience of both the child and the family. Leila highlights Julie's return to normal activities, including participating in the school band, as milestones in her recovery.Family dynamics and adapting to a new normal at home are central themes. Leila explains how they navigated through changes, setting boundaries to protect Julie's health and creating new family traditions. She emphasizes the importance of living in the present and finding joy in small moments, reflecting on the perspective gained through this challenging journey.Lastly, the role of support systems, particularly the medical team and communities like Momcology, is discussed. Leila underscores the value of these networks in providing support and understanding to families undergoing similar experiences. The podcast ends with Leila offering insights and advice for other caregivers, highlighting the importance of community, self-care, and focusing on the present.Momcology Website: https://momcology.org/Other ResourcesNational 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/
Welcome to Season 12 of the Marrow Masters Podcast, brought to you by the National Bone Marrow Transplant link, and sponsored by Sanofi. This season focuses on one critical question. "I'm home, now what?" You'll hear candid stories and advice from survivors and caregivers. This season, you'll also get valuable advice from a registered dietician and a social worker. .Season 12 of the Marrow Masters Podcast is out December 19th, 2023. Don't miss an episode - follow our show for free on Apple, Spotify, YouTube, or at N-B-M-T-link-dot-org.
Loriana Hernandez felt like she had it all. She'd been a news anchor all over the country whose profile had risen nationally. In her own words, she was a clean-eating, green-drinking, yoga enthusiast. She had a two-year-old son, and was in the midst of fertility treatment when her doctor noticed there was something wrong.Loriana had AML Leukemia, and a doctor contact at world-renowned Johns Hopkins told her "Get on a plane. Say goodbye to your son. You don't have time to waste. We have a bed waiting for you." She had reported on these stories for years. Now Loriana was the story. In fact, she still deals with the PTSD from her son calling after her down the jetway - a son who wouldn't recognize her after she'd been away for months of treatment.At Johns Hopkins, reality set in. Because of her Cuban heritage, and lack of people of color on bone marrow registries, she was given a 25% chance of survival. She was told to put her armor on, and she believes that her healthy lifestyle indeed helped her "armor up" for her battle, which included high-intensity chemotherapy. At one point, she was sent home. Doctors believed this might be her last chance to see her son.Loriana did receive a bone marrow transplant from her sister, and was able to see her son before Christmas. Throughout her treatment and after she was sent home to recover, she did was she was professionally trained to do as a storyteller. Loriana reported. She reported on all the trials and tribulations of the process, including the psychological challenges we don't often hear about. This would later include developing breast cancer because of her chemotherapy, which she also survived. This time she was able to be with her son during treatment, which she saw as a win.Loriana founded Armor Up For Life, a non-profit that helps people, particularly those in underserved communities, get healthy and prepare for the fight if they do indeed find themselves in a battle like she did. They've coined the term "PRE-hab."Armor Up For Life Website: https://armorupforlife.org/Instagram: https://www.instagram.com/armorupforlife/Facebook: https://www.facebook.com/armorupforlife/Look for her podcast, "Stage Free," coming soon.Other ResourcesNational 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 and The Leukemia & Lymphoma Society.https://www.sanofi.com/https://www.lls.org/patient-support
Peter Gordon is no stranger to the National Bone Marrow Transplant Link. The author of "Six Years and Counting: Love, Leukemia, and the Long Road Onward" was very well received at our book club. Today you'll hear his story.In 2008, this avid outdoorsman was living in the White Mountains of New Hampshire, and his girlfriend had just moved down from Montreal to marry him. Soon after, he was diagnosed with leukemia and put on the transplant waiting list at Boston's Dana Farber Cancer Institute. The wait for a donor was the hardest part for him, as weeks turned into months.Eventually, Peter did get his transplant and returned to his idyllic surroundings to recover. Soon after, his new wife slipped on ice and shattered her knee and ankle. Peter had to take the role of caregiver as he continued his own recovery. 14 years after his transplant, Peter still battles chronic Graft vs Host Disease. During his treatment, he began writing a blog. As Peter showed the outside world what his treatment was like, he discovered a passion for writing, eventually leading to the book. He even has a section in the book on lessons for patients, called Many Medicines Besides Drugs. Peter gives his advice, including writing down all of your symptoms, and understanding that your recovery will have peaks and valleys. And you'll also hear a great piece of advice that Peter and his wife learned from - believe it or not - their cat, Gizmo. Link to Peter's Book: https://www.amazon.com/Six-Years-Counting-Leukemia-Onward/dp/1478750626Other ResourcesNational 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.Peter's book Six Years and Counting: Love, Leukemia, and the Long Road OnwardPeter's Writer/Speaker Facebook pagePeter's LinkedIn profileThank you to this season's sponsors:Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.https://www.sanofi.com/https://www.lls.org/patient-support
We first met the incredible Sharde Fultz in our very first season of Marrow Masters, back in 2019. We wanted to reconnect with her as one our our "survivors who thrive" this season.In 2009, Sharde was a college student, living on campus as a dance major with big dreams. Then she was diagnosed with non-Hodgkins Lymphoma. Following chemotherapy and radiation, Sharde received an an allogeneic bone marrow transplant in 2011. Having to leave school, she immersed herself in online support forums for young adult cancer patients.When Sharde returned to school, between her recovery and chronic GVHD, she had to come to terms with some physical limitations. While she still had a passion for dance, she'd need to pivot. Her time interacting with fellow cancer survivors really sparked something in her. She wanted to be able to related to not just other patients, but also people who looked like her. She could fight against some of the inequities in our health care system.Sharde connected with an organization called Next Step, which sends people on "campferences" - part camp, part conference. She attended a campference in 2010, and now works for the organization. Speaking engagements turned into a facilitator role for young adult cancer camps. She's now the conference director, and is working toward a degree in social work.Sharde's advice for fellow cancer survivors is to change how you think about time, and don't compare your journey to anyone else's progress.Next Step Fund website: https://www.nextstepnet.org/Cassie Hines Shoes Cancer: https://cassiehinesshoescancer.org/Stupid Cancer: https://stupidcancer.org/First Descents: https://firstdescents.org/Camp Mak-A-Dream: https://www.campdream.org/Other ResourcesNational 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 and The Leukemia & Lymphoma Society.https://www.sanofi.com/https://www.lls.org/patient-support
As a patient, Mike Rubin was at the forefront of bone marrow transplants when he received one in 1987 at the age of 24. Today, he serves a director of philanthropic gifts for the very place he received his transplant - Seattle's Fred Hutch Cancer Center.In the mid 80's, Mike was diagnosed with myelodysplasia, which would eventually morph into AML leukemia. After consulting with some of the nation's leading cancer centers, Mike and his family settled on the institution that pioneered bone marrow transplants, The Hutch. Mike's sister would be his donor.Mike's journey changed his professional perspective. This one-time New York ad exec needed to do something different. He enrolled in nursing school but found that wasn't the best fit. So he took some time, and became part owner of a whole grain, collectively-run, organic bakery. This would would give him some time to recover and think about what he wanted to do next.Mike went to law school, and soon found a passion for fundraising and working with philanthropic giving. Not only had this native New Yorker fallen in love with Seattle, but he also felt a deep connection to the Hutch. This led to Mike working for the organization that saved his life, and him paying it forward.Fred Hutch Website: https://www.fredhutch.org/en.html Other ResourcesNational 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 and The Leukemia & Lymphoma Society.https://www.sanofi.com/https://www.lls.org/patient-support
As a child, Molly Pratt had a fear of medical facilities. Today, you'll hear how her perspective changed. She's now a BSN, RN in Pediatrics at Beaumont Children's at Corewell Health's Beaumont Hospital, Royal Oak, Michigan.Molly was an active 16 year-old high school student when she was diagnosed with Hodgkin's Lymphoma. Her first round of treatment involved outpatient chemotherapy, but she eventually needed a bone marrow transplant, which she received in 2017. Her priorities shifted from extracurricular activities and college tours to her inpatient recovery.But her hospital stay changed her perspective. Her nurses became her social circle, playing card games with them late at night. Inspired by her care, she decided to follow in their footsteps. She now provides the same level of compassion to the kids she works with. She's able to relate to their experiences, having been through the process herself. In fact, she just had her final 6 month checkup, and she got to spend time with her patients in clinic, as a patient herself.Molly leaves us with inspiring advice about not taking any day for granted, and having the confidence to accomplish whatever it is you set your mind to.ResourcesNational 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 and The Leukemia & Lymphoma Society. https://www.sanofi.com/https://www.lls.org/patient-support
Dr. Brad Zebrack is not only an incredible social worker who specializes in oncology but he is survivor himself. Brad was diagnosed with Hodgkin's lymphoma, at the age of 25, back in 1989. We spend some time on the term "survivor" - 40 years ago it referred to the family members left behind when someone died of cancer. Now, a survivor is anyone who is still alive, starting from the moment of diagnosis. But it's important to remember that every journey is different, and terms like this can mean different things to different people.For some patients, they embrace "the new normal." For others, they prefer to put their cancer journey "away in a little box" and not think about it, following treatment. The important thing is that attitudes in oncology have changed. The time after initial treatment is being looked at more carefully.Positive attitude is a term that is also frequently misinterpreted. While a good mindset has shown to have physical benefits, it doesn't necessarily mean being happy every day. Brad explains that it's more about being OK with where you are each day.We break down Julia Rowland's "5 D's of cancer" - distance, disfigurement, disability, dependence, and death. Depending on a patient's age and where they are in life, each of these "5 D's" can factor into mindset differently.Finally, we talk about the importance, specifically, of mental health care. It's more widely discussed nowadays, and it's a vital part of care, both during and after cancer treatment.Connect with Brad's teams on Twitter:University of Michigan Rogel Cancer Center: https://twitter.com/umrogelcancerUniversity of Michigan School of Social Work: https://twitter.com/umsocialworkLink to Handbook of Psychooncology, by Jimmie C. Holland and Julia H. Rowland (containing the chapter on "The 5 D's" of cancer mentioned today): https://www.amazon.com/Handbook-Psychooncology-Psychological-Patient-Cancer/dp/019504308Other Resources:National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKnbmtLINK YouTube Page can be found by clicking here.Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.https://www.sanofi.com/https://www.lls.org/patient-support
Welcome to Marrow Masters Season 11, sponsored by The Leukemia & Lymphoma Society and Sanofi.The National Bone Marrow Transplant Link, established in 1992 strives to help patients, caregivers and families cope with the psychosocial challenges of bone marrow/stem cell transplant from diagnosis through survivorship.Season 11 of our show focuses on thriving in survivorship. We know it's hard work. In this season, you will meet six incredible people who will share the challenges they faced as life happened, plans changed, and they learned to bend and grow post-transplant. Listen to what they have learned—how to be flexible and give themselves grace, and often time. This season will inspire us all to listen to our hearts and get on with the business of living, despite all that we have been through.Follow the Marrow Masters podcast for free on Apple Podcasts, Spotify, YouTube, or via our website: https://www.nbmtlink.org/Resources:National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKnbmtLINK YouTube Page can be found by clicking here.Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.https://www.sanofi.com/https://www.lls.org/patient-support
As this season focuses on Graft Versus Host Disease (GVHD), we thought we would start with the basics. Today we welcome Melora Rennie, OTR/L, CLT-LANA, an Occupational Therapist from the blood and marrow transplant unit at Northside Hospital in Atlanta. She helps patients who are battling various blood and marrow cancers such as leukemia, lymphoma, aplastic anemia, multiple myeloma and even sickle cell disease.Melora explains the reasons for and different types of bone marrow transplants, from autologous to allogeneic. In an allogeneic transplant, when you receive donor cells from someone else, you could face Graft Versus Host Disease. Acute GVHD occurs in the first 100 days after transplant. Chronic GVHD relates to problems seen thereafter.Chronic GVHD can attack many different systems in the body - from integumentary (skin), to respiratory, musculoskeletal, genital/urinary, neurological, ocular (eyes), reproductive, and vascular/lymphatic. Melora walks through the different presentations. Additionally, transplant patients may also deal with cancer related fatigue and social isolation, which are both important to acknowledge. Melora will also address medication and side effects, including the impact of steroids.In her role as an Occupational Therapist (OT), Melora is a key part of the rehabilitation team. She and her colleagues help individuals develop, regain, or maintain skills necessary for engagement in daily living and meaningful activities - everything from waking up in the morning to falling asleep at night. OTs can work in acute care, post-acute rehab, outpatient, in-home, or other settings.Occupational Therapists address functional limitations, related to an individual's cognition, activity tolerance, balance, strength, range of motion, and motor skills. They utilize a variety of therapeutic interventions in order to restore and maintain participation in the activities of daily life. When working specifically with oncology patients, Occupational Therapists want to ward off any functional decline that may be associated with cancer treatment. Related to fatigue, they assist patients with pacing and energy conservation techniques. OTs also work with cognition, pain management, and mental/emotional well being. These are vital components of patient care that cannot be overlooked. This can even include modifying a patient's favorite activity so they can continue to engage in it. Melora and her team also provide training, education and support for caregivers, a crucial part of any patient's health care team.We close this episode with the inspiring story of one of Melora's patients, as well as her advice to you and your loved ones, as you work through your transplant journey. There is hope and Melora will offer plenty of it. Links:Northside Hospital: Blood and Marrow Transplant Group: https://www.northside.com/locations/blood-marrow-transplant-group-of-georgiaNorthside Hospital's Rehabilitation Services: https://www.northside.com/services/rehabilitation-servicesOther ResourcesNational 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 this season's sponsors:Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)Incyte: https://www.incyte.com/
It's hard not to be inspired by the story of today's guest. Jim Bond is a four-time transplant survivor, dating back to his first transplant in 1993, following his 1992 diagnosis.. He's participated in a life-saving clinical trial. In 2002, he was running out of options after his third transplant. In fact, his doctor was ready to send him to hospice care. But Jim wouldn't take no for an answer, travelled from Cleveland to Boston, and continued his fight. Wouldn't you know, he was the seventh patient in the trial. That's right. Jim Bond was patient 007. It was fate.A decade later, Jim was diagnosed with treatment-, Jim needed to find a bone marrow match for his fourth transplant. The website Be The Match saved his life, thanks to the bone marrow of a woman in Germany.Jim has had to battle chronic GVHD since this fourth transplant, and he walks us through some of his symptoms, as well as what he's done to alleviate them. And he's paying it forward, with a book and series of YouTube videos (links below).Jim's book, applauded by many organizations, called "The Man in the Arena Surviving Multiple Myeloma since 1992" is a wonderful gift to all of us, sure to inspire. All profits from the book go to cancer charities.Jim's wife Kathleen founded the American Cancer Society's Pan Ohio Hope Ride, a bicycle ride across the state from Cleveland to Cincinnati. Note: the 328 miles holds a special meaning--as you can see here on Jim's hat.Jim Bond has been through a lot in 31 years, but he tells us it's all worth it. He's had more time with his wife, children, and grandchildren, and been able to travel to places he'd only seen on a map. But not every day is easy. We close with some of Jim's strategies to fight through when the going gets tough.Be The Match Website: https://bethematch.org/Pan Ohio Hope Ride: https://secure.acsevents.org/site/STR?pg=entry&fr_id=104198BostonSight website: https://www.bostonsightscleral.org/Link to Jim's Book, The Man in the Arena, Surviving Multiple Myeloma since 1992: https://arenamanbook.wordpress.com/Jim's YouTube Page with tip videos: https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysgYou can email Jim at Jim.Bond48@gmail.comOther ResourcesNational 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 this season's sponsors:Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)Incyte: https://www.incyte.com/
Dr. Matt Kalaycio is the Vice Chairman of the Taussig Cancer Institute at the Cleveland Clinic. He joins us today to talk about clinical trials - the hope they bring, the lives they save, and why they are so important in regards to Graft Versus Host Disease.For example, the popular GVHD drugs Ruxolitinib, Ibrutinib, and Belumosudil They were found to be effective, thanks to clinical trials Dr. Kalaycio walks us through how that happened.Clinical trials are often intimidating, or even frightening to patients. People are afraid of being a "guinea pig." Dr Kalaycio addressed this and goes through all the safeguards around clinical trials, as well as the three phases of clinical trials.This may be hard to believe, but a long time ago, doctors would experiment on patients without their knowledge or consent. Thankfully those days are long behind us, and patients now give informed consent. Everything is explained to them, and all their questions are answered. Perhaps most importantly, the patient can opt out of the trial at any time for any reason.Many GVHD patients are offered the chance to participate in a clinical trial. If you'd like to learn more, the first place to start is with your treatment team. Beyond that, you can also visit the clinical trials website below.We close by asking Dr. Kalaycio about some of the clinical trials he's currently involved with, as well as what gives him hope going forward. He's been working with GVHD patients and their loved ones since 1992, and he's had a front row seat for just how far treatment has come. He is compassionate and empathetic and it shines through in this interview. Clinical Trials Website: https://clinicaltrials.gov/Cleveland Clinic Website: https://my.clevelandclinic.org/Dr. Matt Kalaycio bio: https://my.clevelandclinic.org/staff/473-matt-kalaycioOther ResourcesNational 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 this season's sponsors:Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)Incyte: https://www.incyte.com/
Rhonda Frederick Stewart has been through it all. She was diagnosed with non-Hodgkin's lymphoma in 2012. Her chemo treatment likely led to acute myeloid leukemia (AML). Later, she developed both a brain bleed and an aneurism. Today, she takes us through her journey of survivorship and inspiration.Rhonda's treatment has led to Chronic Graft Versus Host Disease(GVHD) of the lungs, skin, eyes. and gastrointestinal system (GI system.) Through a combination of communications with her medical team at Johns Hopkins, and a desire to "figure things out," she tells us how she fought through each of these symptoms. In fact, many of her tips and tricks may benefit our listeners.Throughout her treatment, today's guest developed her "Rhonda Realism." Sometimes, it's a bad day. Rhonda often relies on music, prayer, and her spirituality to get through the bad days. Because, as she is fond of saying (and singing), "The sun will come out tomorrow!"In fact, she's put her fighting spirit to paper. You can find out more about her book below.Rhonda's Book The Faith Fighter vs. The Health Destroyer: https://www.amazon.com/Faith-Fighter-Health-Destroyer-ebook/dp/B0B3YC5X9NSystane eye drops mentioned by Rhonda: https://systane.myalcon.comOther ResourcesNational 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 this season's sponsors:Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)Incyte: https://www.incyte.com/
Dr. Andy Harris was diagnosed with acute myeloid leukemia (AML) when he was a 19 year old pre-med college student. After receiving lifesaving care at the University of Michigan, he vowed to pay it forward. Now he works with young people at Memorial Sloan Kettering Cancer Center in New York.Today we do a deep dive with Dr. Harris on the unique challenges posed to kids of all ages fighting cancer. Babies are supposed to be spending this time bonding with their parents. Toddlers are supposed to be starting school. Older kids are supposed to be learning social skills, and teenagers are supposed to be forming their own identity. No matter what the patient's age, the treatment process is a major disruption to their lives and development.Going through a life-threatening situation will change anyone's perspective, but this can be especially true of kids. And often, their peers don't know how to react. Sadly, friends may drop off. Others may not know what to say, or be intimidated to broach the topic. And patients may miss out on milestones - homecoming, prom, sports, and much more.Dr. Harris and his colleagues work on an individualized treatment plan for each and every patient. This may include different therapies, and facilitating any necessary accommodations when they return to school and/or work. This can include coordinating with school nurses on any necessary treatment.It's important to remember that each patient has their own timetable, both physically and mentally. Peer support groups can often be a great way to find common ground, understanding, and help.Often, the relationship with a patient's parents can be challenging. A child who was just finding their independence may suddenly find themself in need of more support. And on the back end, parents may have a difficult time with the child regaining independence. Counseling can be another great tool here.Dr. Harris isn't quick to tell his patients that he's an AML and bone marrow transplant survivor. He's happy to answer any questions honestly, but every cancer journey is different and he is aware of this when talking to his patients and their loved ones.Memorial Sloan Kettering Cancer Center Website: https://www.mskcc.org/Andy Harris Bio: https://www.mskcc.org/cancer-care/doctors/andrew-harrisOther ResourcesNational 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 this season's sponsors:Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)Incyte: https://www.incyte.com/
Dr. Barbara Abernathy is the President and CEO of The Pediatric Oncology Support Team, (POST) serving South Florida. She was already working at POST, helping pediatric cancer patients and their families, when she herself was diagnosed with Polycythemia Vera, a blood cancer, in 1996. She kept her diagnosis to herself.In 2013, Barb's disease morphed into AML, and she was in urgent need of a bone marrow transplant. A match, a young man in Germany, was found. Barb's intimate knowledge of cancer treatment proved both blessing and a curse. She quite honestly was more afraid of Graft Versus Host Disease (GVHD) than she was of dying from the transplant.After her bone marrow transplant at Moffitt Cancer Center in Tampa, she dealt with acute GVHD of the eyes, gastrointestinal system (GI system), skin, and liver. Her acute GVHD rolled right into chronic. Her existing symptoms persisted, including hair loss due to alopecia. People assume she's still in treatment because of the hair loss.Barb is very honest about the challenges of living with GVHD. Not being able to sweat in Florida requires a lot of planning and care. There was also the isolation during the pandemic. Fatigue is also an issue. Sometimes it's challenging just to keep the house clean. This affects her desire to have friends over; it's not that she doesn't want to see them!Her personal experience has led to greater connections with her patients. She's walked the walk and can talk the talk. Barb talks about the importance of advocating for yourself or your child with your medical team. We also spend some time on how friends and family can help. Sometimes it is as easy as changing the plan to better accommodate the survivor--maybe a breakfast date instead of a dinner date. It's important to LISTEN and not just offer something you think they need. Peer support is also key. Between patients and her own journey, Barb has many years of experience with GVHD. She talks about the new advances in therapy, how far we've come, and how it's given her hope for future treatment.Barb's nonprofit, Pediatric Oncology Support Team (POST) Website: https://postfl.org/Other ResourcesNational 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 this season's sponsors:Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)Incyte: https://www.incyte.com/
SEASON 10 OF MARROW MASTERS WILL BE OUT ON THURSDAY, JUNE 22, 2023!Welcome to Marrow Masters Season 10, sponsored by Pharmacylics and Janssen, and Incyte. The National Bone Marrow Transplant Link, established in 1992, strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow and stem cell transplant from diagnosis through survivorship.Season 10 focuses on sharing hope and inspiration regarding chronic graft versus host disease, or GVHD. This season will cover the importance of clinical trials. Find out what survivors wish they and their loved ones had known before, during, and after transplant. We'll also talk about the unique needs of young adults.This season's roster of clinicians and survivors will "keep it real," when it comes to GVHD, but also inspire you to continue on.Resources:National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKnbmtLINK YouTube Page can be found by clicking here.Thank you to this season's sponsors:Pharmacyclics: https://www.pharmacyclics.com/Janssen: https://www.janssen.com/Incyte: https://www.incyte.com/
Kate Arnold underwent a stem cell transplant for Non-Hodgkins Lymphoma 12 years ago. She joins us today to discuss her best survivorship tips for every step of the process.First, you need a goal--- a "why." For Kate, she wanted to get her young daughters through high school. Today, they are both in college.Throughout this process, listen to your gut. ASK QUESTIONS - there are no stupid questions, even if they seem trivial. Make sure you have a medical team that you are comfortable with. Despite many options available in Chicago, Kate opted to have her treatment at MD Anderson Cancer Center in Houston.It's also important to find humor in your situation. Kate says she and her husband were very open about their story, and weren't afraid to crack jokes. Also, even if you have cancer, you still have a life beyond that. Kate talks about dancing in the kitchen with her kids.Make your mental health a priority. Through the Cancer Wellness Center, Kate found a therapist that had a specialty in oncology - she was uniquely qualified to talk about all aspects of the process - even those dark thoughts that creep into a patient's head. She learned that adjusting to a gratitude mindset was very helpful.Because she wasn't afraid to speak up for herself, Kate often got direct phone numbers for doctors and other staff. She tells us a story about when that came in very handy.Often, when you have cancer, well-meaning friends and family can say some pretty awful things. Kate and Peg talk about ways to pivot the conversation away from difficult topics, horror stories, or simply bad advice.Kate is very open and honest about regrets she has had through this whole process. She wishes she had secured mental health help for her kids earlier, and she also wishes she'd been more compassionate toward bad behavior. She encourages any parent with cancer to think about where their children's outbursts are coming from. In fact, it was something her youngest said that gave her clarity.All patients - and all treatment centers - are different. Advice and protocols change between them. It's important to listen to your medical team.Links: MD Anderson Cancer Center: https://www.mdanderson.org/Imerman Angels: https://imermanangels.org/Be The Match: https://bethematch.org/Other ResourcesNational 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 this season's sponsors:The Leukemia & Lymphoma Society, www.lls.orgSanofi: https://www.sanofi.com/
This is a special episode of the Marrow Masters Podcast. Not only do we have two guests, but we are also diving into a very important topic that isn't often discussed. When you're facing transplant, fertility may be the furthest thing from your mind. But chemotherapy, radiation, and other treatments could impact your body's ability to start a family. That's why it's critically important to at least have a conversation before starting treatment.Today's guests are Dr. Quinton Katler, a reproductive endocrinologist at Shady Grove Fertility, and Emily Beard, a Registered Nurse with Northside Cancer Institute. They are here to share their perspectives and talk about options.Fertility preservation can take as little as two weeks. And while some patients must begin treatment immediately, there are many cases in which a two-week delay will not impact a patient's prognosis. A patient in their 20's, for example, may not be thinking about starting a family right now, but could have plans to later in life. This is why it can be critical to look at options, and have a collaborative conversation with his or her entire team.Emily talks about the mental health issues surrounding these conversations, and Dr. Katler gets into the medical options. These can include egg harvesting and freezing, embryo freezing, and freezing of sperm. These are ways to preserve the building blocks of life before they can be damaged by cancer treatment. Following treatment and a waiting period, Dr. Katler walks us through the processes of IUI, IVF, and more. And of course there are other options, such as adoption.Many of these procedures do come with "sticker shock," and we have a comprehensive list of resources available to our listeners, including:American Cancer Society: https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/fertility-and-women-with-cancer/how-cancer-treatments-affect-fertility.htmlLive Strong Family Building Options including Fertility Preservation: https://www.livestrong.org/we-can-help/fertility-services/helping-fertility-centers-provide-family-building-options-cancer-patientsFertility Scout (from Alliance for Fertility Preservation): https://www.allianceforfertilitypreservation.org/about-fertility-scout/SaveMyFertility.com: https://www.savemyfertility.org/pocket-guides/patients/fertility-preservation-women-diagnosed-cancerOncofertility financial assistanceTeam Maggie's Dream (need based grants available for fertility preservation costs): https://www.teammaggiesdream.org/grantsThe Sam Fund: https://www.thesamfund.org/get-help/resources/family-building-support/Other small non profit organizations that support family building in various waysWorth the Wait (funding for family building options e.g. IVF, adoption, surrogacy, et.) - https://worththewaitcharity.com/who-we-support/Verna's Purse (funds for storage fees through Reprotech) - https://www.reprotech.com/vernas-purse/LiveStrong financial assistance – https://www.livestrong.org/what-we-do/program/fertilityNorthside Hospital Cancer Institute: https://www.northside.com/services/cancer-instituteShady Grove Fertility: https://www.shadygrovefertility.comNewsletter about this topic: https://www.northside.com/about/news-center/article-details/oncofertility-emerges-as-a-new-specialty-in-survivor-careNational 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 this season's sponsors:The Leukemia & Lymphoma Society, www.lls.orgSanofi: https://www.sanofi.com/
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