Episodes
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**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/
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**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/
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Missing episodes?
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**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/
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**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/
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**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/
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**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/
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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
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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
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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
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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
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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
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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
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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
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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/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
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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-georgia
Northside Hospital's Rehabilitation Services: https://www.northside.com/services/rehabilitation-services
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 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/
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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=104198
BostonSight 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_4avhBysg
You can email Jim at [email protected]
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 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/
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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-kalaycio
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 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/
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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/B0B3YC5X9N
Systane eye drops mentioned by Rhonda: https://systane.myalcon.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 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/
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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-harris
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 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/
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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 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 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/
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