Episodes

  • Season 15 Trailer

    Season 15 Trailer
    Nov 7 2024

    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/
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    3 mins
  • Men's Sexual Health and GVHD w Dr. Jose Flores of MSK

    Men's Sexual Health and GVHD w Dr. Jose Flores of MSK
    Aug 8 2024

    This episode includes content related to reproductive organs and sexual health and may not be suitable for all listeners.

    A transcript of this episode can be found here: https://marrowmasters.simplecast.com/episodes/mens-sexual-health-gvhd/transcript

    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.org

    International Index of Erectile Dysfunction: https://www.uptodate.com

    Testosterone Replacement Therapy Information: https://www.urologyhealth.org

    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/
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    28 mins
  • Caregiver Perspective: Chronic Graft Versus Host Disease: Meet Angie Giallourakis of Elephants and Tea

    Caregiver Perspective: Chronic Graft Versus Host Disease: Meet Angie Giallourakis of Elephants and Tea
    Aug 8 2024

    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.org

    Elephants and Tea: https://www.elephantsandtea.com

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

    nbmtLINK 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/
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    37 mins
  • Women's Sexual Health and Graft Versus Host Disease Discussed with Dr. Tosin Goje of Cleveland Clinic

    Women's Sexual Health and Graft Versus Host Disease Discussed with Dr. Tosin Goje of Cleveland Clinic
    Aug 8 2024
    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/
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    30 mins
  • Atypical Graft Versus Host Disease Presentations Examined with Dr. Doris Ponce of MSKCC

    Atypical Graft Versus Host Disease Presentations Examined with Dr. Doris Ponce of MSKCC
    Aug 8 2024
    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/
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    28 mins
  • Surviving & Thriving: JR Brandt's Journey with Chronic Graft Versus Host Disease

    Surviving & Thriving: JR Brandt's Journey with Chronic Graft Versus Host Disease
    Aug 8 2024
    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/
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    28 mins
  • Navigating Psychological Distress of Graft Versus Host Disease: Insights from Dr. Hermi Amonoo

    Navigating Psychological Distress of Graft Versus Host Disease: Insights from Dr. Hermi Amonoo
    Aug 8 2024

    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/gvhdupsidedown

    Elephants and Tea: https://elephantsandtea.com

    National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

    nbmtLINK Website: https://www.nbmtlink.org/

    nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

    nbmtLINK 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/
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    27 mins
  • Season 14 Trailer: The Parts of cGVHD We Don't Often Talk About

    Season 14 Trailer: The Parts of cGVHD We Don't Often Talk About
    Aug 2 2024

    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/
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    3 mins