Avsnitt
-
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 highlighted
One 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/S266663672301713X
Sarah Cannon Transplant and Cellular Therapy Program https://sarahcannon.com/service/blood-cancer
Tristar 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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
In today's episode, we have the pleasure of speaking with Janet Young from Massachusetts, who shares her challenging yet inspiring journey with acute myeloid leukemia (AML) and her subsequent stem cell transplant. Diagnosed in March 2022, Janet underwent a transplant in August of the same year after a regimen of intensive chemotherapy. Remarkably, her transplant occurs on her ACTUAL birthday, adding a poignant touch to her recovery story.
Janet discusses the profound fatigue she experiences post-transplant, describing it as an overwhelming tiredness that significantly limited her daily activities initially. However, over 21 months, she's progressed from barely being able to walk to her driveway to completing a two-and-a-half-mile walk, a significant achievement in her recovery.
Another major challenge Janet faces is the loss of muscle strength, for which she has been in physical therapy, greatly improving her stamina. Cognitive issues, particularly with memory and word recall, are also significant hurdles that Janet continues to navigate. These symptoms are common among transplant recipients and will slowly improve.
Janet also touches on Graft Versus Host Disease (GVHD), a complication of her transplant manifesting mainly in her lower limbs. Treatment for GVHD includes starting a medication called Rezurock, which she hopes will be effective.
Her social interactions have changed, too. She spent a year isolated post-transplant, which has altered her casual relationships although her closer friendships remain strong. Janet also mentions adapting her life to manage her energy better, using the "spoon theory" to prioritize activities based on her daily energy levels.
Concluding the interview, Janet shares how she has had to modify her approach to planning and socializing, focusing on self-care and adjusting to a new normal. She remains thankful for every new day and emphasizes the importance of support groups in her ongoing recovery.
This powerful story not only highlights the physical and emotional challenges of dealing with AML and undergoing a stem cell transplant but also showcases the resilience and gradual return to normalcy despite the challenges of GVHD. Janet's journey is a testament to the power of medical treatment, personal determination, and community support in navigating life after a major health crisis.
Resources:
Dana Farber Cancer Institute https://www.dana-farber.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
Saknas det avsnitt?
-
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 Transplants
UC 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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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=100077793195673
NMDP (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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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.org
LLS Health Manager App: https://www.lls.org/article/lls-health-manager-app-available-now
Fairlife Product Website: https://fairlife.com/
Survivor Gregory Proctor's book Faith, Strength, and Courage: https://www.amazon.com/FAITH-STRENGTH-COURAGE-Overcoming-Adversity/dp/760919834X
Food Safety Podcast Episode with Sue Hill: https://marrowmasters.simplecast.com/episodes/sue-hill
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
Our 13th season of the Marrowmasters 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 [email protected] 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/1684039010
Book: 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/0369366956
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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
**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 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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
**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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
**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-handling
Bananatrol 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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
**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/B08BTMJ2RG
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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
**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 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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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 www.nbmtlink.org
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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 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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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/1478750626
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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Peter's book Six Years and Counting: Love, Leukemia, and the Long Road Onward
Peter's Writer/Speaker Facebook page
Peter's LinkedIn profile
Thank 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
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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 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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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 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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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.
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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
-
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/umrogelcancer
University of Michigan School of Social Work: https://twitter.com/umsocialwork
Link 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/019504308
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/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi and The Leukemia & Lymphoma Society.
https://www.sanofi.com/
https://www.lls.org/patient-support
Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/
- Visa fler
