Marrow Masters

The National Bone Marrow Transplant Link

This podcast series educates patients, caregivers, and health care professionals regarding important topics as they relate to bone marrow/stem cell transplant and Car-T cellular therapy. Our newest installment, Season 13, takes a deep dive into many of the side effects survivors and caregivers handle post-transplant. Season 12 answers the critical question of "I'm Home, Now What?" Season 11 covers survivors who are thriving. Season 10 covers Graft Versus Host Disease (GVHD) focusing on hope and inspiration. Season 9 covers incredible tips before, during and after transplant--things folks wish they had known. Season 8 covers All Things Related to Clinical Trials. Seasons 7 and 6 focus on important topics related to Graft Versus Host Disease (GVHD). In earlier seasons, we covered all things survivorship (Season 5), the caregiver perspective (Season 4), the patient perspective (Season 3), busting marrow myths (Season 2), and chronic GVHD (Season 1). With more than 28,000 downloads today, we are so thrilled to offer these pods

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Top 10 Marrow Masters Episodes

Goodpods has curated a list of the 10 best Marrow Masters episodes, ranked by the number of listens and likes each episode have garnered from our listeners. If you are listening to Marrow Masters for the first time, there's no better place to start than with one of these standout episodes. If you are a fan of the show, vote for your favorite Marrow Masters episode by adding your comments to the episode page.

Preserving Fertility Through Cancer Treatment

Marrow Masters

12/14/22 • 34 min

This is a special episode of the Marrow Masters Podcast. Not only do we have two guests, but we are also diving into a very important topic that isn't often discussed. When you're facing transplant, fertility may be the furthest thing from your mind. But chemotherapy, radiation, and other treatments could impact your body's ability to start a family. That's why it's critically important to at least have a conversation before starting treatment.

Today's guests are Dr. Quinton Katler, a reproductive endocrinologist at Shady Grove Fertility, and Emily Beard, a Registered Nurse with Northside Cancer Institute. They are here to share their perspectives and talk about options.

Fertility preservation can take as little as two weeks. And while some patients must begin treatment immediately, there are many cases in which a two-week delay will not impact a patient's prognosis. A patient in their 20's, for example, may not be thinking about starting a family right now, but could have plans to later in life. This is why it can be critical to look at options, and have a collaborative conversation with his or her entire team.

Emily talks about the mental health issues surrounding these conversations, and Dr. Katler gets into the medical options. These can include egg harvesting and freezing, embryo freezing, and freezing of sperm. These are ways to preserve the building blocks of life before they can be damaged by cancer treatment. Following treatment and a waiting period, Dr. Katler walks us through the processes of IUI, IVF, and more. And of course there are other options, such as adoption.

Many of these procedures do come with "sticker shock," and we have a comprehensive list of resources available to our listeners, including:

American Cancer Society: https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/fertility-and-women-with-cancer/how-cancer-treatments-affect-fertility.html

Live Strong Family Building Options including Fertility Preservation: https://www.livestrong.org/we-can-help/fertility-services/helping-fertility-centers-provide-family-building-options-cancer-patients

Fertility Scout (from Alliance for Fertility Preservation): https://www.allianceforfertilitypreservation.org/about-fertility-scout/

SaveMyFertility.com: https://www.savemyfertility.org/pocket-guides/patients/fertility-preservation-women-diagnosed-cancer

Oncofertility financial assistance

Team Maggie’s Dream (need based grants available for fertility preservation costs): https://www.teammaggiesdream.org/grants

The Sam Fund: https://www.thesamfund.org/get-help/resources/family-building-support/

Other small non profit organizations that support family building in various ways

Worth the Wait (funding for family building options e.g. IVF, adoption, surrogacy, et.) - https://worththewaitcharity.com/who-we-support/

Verna’s Purse (funds for storage fees through Reprotech) - https://www.reprotech.com/vernas-purse/

LiveStrong financial assistance – https://www.livestrong.org/what-we-do/program/fertility

Northside Hospital Cancer Institute: https://www.northside.com/services/cancer-institute

Shady Grove Fertility: https://www.shadygrovefertility.com

Newsletter about this topic: https://www.northside.com/about/news-center/article-details/oncofertility-emerges-as-a-new-specialty-in-survivor-care

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

nbmtLINK Website:

Meet James D. Bond, Sr. and Learn How Multiple Myeloma Met Its Match!

Marrow Masters

07/08/20 • 22 min

Strapped in with an amazing support system, James D. Bond, Sr. showed Multiple Myeloma what he was made of many decades ago. GVHD has also taken its toll but James beat that too.

Second opinions, six clinical trials, four bone marrow transplants and a super attitude all played a life-saving role in this happy ending. And we will let James tell you his Patient 007 story!

James also shares the role his loving wife Kathleen has played in his survival and care. In fact, Kathleen developed a cycling fundraising event that soon turned into the Pan Ohio Hope Ride, a 328-mile bike ride over four days that benefits the American Cancer Society Hope Lodge, which provides free lodging for cancer patients and their families. James has participated through the years as well as a rider.

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. The listed resources are not intended to be endorsements.

Pan Ohio Hope Ride Website: http://pohr.org/

Now, 28 years later, after being told he would only live three years, this incredible dad, husband and friend is living life to the fullest. On your mark, get set, go!

For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.

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

The Leukemia & Lymphoma Society: https://www.lls.org/

Bonus: Jim is happy to share his email here in case anyone would like to contact him; [email protected]

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Or visit our website at https://www.nbmtlink.org/

Must Knows about Life-Saving Clinical Trials for Patients and Loved Ones

Marrow Masters

07/08/20 • 23 min

The aim of a clinical trial is to safely, and in a controlled manner, study a brand new therapy, perhaps a drug, new drug combination, targeted therapy or medical device that hasn't been seen before. We might also be testing an already approved drug but for a different indication or disease.

Sometimes a trial is designed to compare a new treatment with a standard treatment to find out which one is more effective or has fewer side effects, or maybe it's just looking at quality of life. Scientists may ask: Is this NEW treatment easier for patients to deal with such as a new pill versus going to an infusion center for an IV infusion? This could be a clinical trial.

For more information, on clinical trials, visit LLS's Clinical Trials Support Center: https://www.lls.org/support/information-specialists/clinical-trial-support-center-ctsc

Here you will find a link to the referral form to submit to the Clinical Trial Support Center nurses to start the referral/trial search process at LLS.

You can also speak to one of their Information Resource Center Specialists about many other issues (financial, disease education, diet, etc) and they can help determine if a clinical trial is the right next step and help fill out the referral with you.

Information Resource Center: https://www.lls.org/support/information-specialists/

Phone: 800-955-4572 (M-F 9am to 9pm EST)

Chat live online (M-F 10am – 7pm ET) or email with any other questions: [email protected].

For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.

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

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Or visit our website at https://www.nbmtlink.org/

If I Am over 60, Am I Too Old for a Bone Marrow/Stem Cell Transplant?

Marrow Masters

11/25/19 • 26 min

Time to bust another myth regarding age and transplant. Listeners will be relieved to hear about older patients receiving life-saving transplants and most often thriving post-transplant.

The likelihood of being diagnosed with a hematologic malignancy (blood cancers: most leukemias, lymphoma, multiple myeloma, etc.) increases substantially above the age of 60.

In the past (more than 20 years ago), blood stem cell transplantation was mostly available to younger patients. However, that is NOT the case today.

Reduced-intensity transplants (developed in the 90's) have allowed treatment of older and/or medically infirm patients. The focus is more on the immunologic graft-vs-tumor effect than on high-dose upfront therapy.

This episode features Dr. Marco Mielcarek, a medical oncologist who is specialized in blood and marrow transplantation. He is a professor of medicine at the University of Washington and the Medical Director of the Adult Blood and Marrow Transplant program at Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance.

Dr. Marco explains autologous vs allogeneic transplant concept (patient’s own stem cell vs. cell from a donor --i.e. sibling or unrelated or other)

At SCCA, Dr. Marco explains, over the last 20 years, the median age of our transplants patients has increased by 13 years (currently: median age, 58 years). This means that half of our patients are older than 58. The oldest patient transplanted recently was 81 years old.

For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Or visit our website at https://www.nbmtlink.org/

Patient Turned Fundraiser Mike Rubin

Marrow Masters

08/31/23 • 32 min

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/

Or visit our website at https://www.nbmtlink.org/

Heather Jim, Ph.D, on Chronic Graft Versus Host Disease Sleep Related Issues

Marrow Masters

06/21/22 • 14 min

Heather Jim, PhD, is a senior member and co-leader of the Health Outcomes and Behavior Research Program at Moffitt Cancer Center in Tampa. Today she walks us through ways to combat sleep issues related to chronic Graft vs. Host Disease. Hopefully the tips here will help all of us get a better night's sleep.

Heather begins by walking us through the importance of sleep, and how that changes as we age. Interestingly, 30% of the general population report sleep problems, but for transplant recipients, that number can rise as high as 60%. We cover some of the most common types of sleep issues, including sleep apnea, insomnia, and restless leg syndrome.

While there are sleeping medications out there, Heather explains Cognitive Behavioral Therapy for Insomnia, or CBTI. While there are psychologists and social workers who specialize in CBTI, there are many practices we can all employ on our own, to stop sabotaging our sleep cycles. This includes mobile apps, linked below in our show notes.

There are seven rules CBTI rules to help improve sleep:

Set aside an hour to wind down before bed (this includes turning screens off!)
Only go to bed when you start to feel sleepy.
If you can't fall asleep in 20-30 minutes, get up and do something boring.
Use an alarm clock to get out of bed at the same time every day.
Use your bed and bedroom only for sleep and sexual activities.
Limit naps during the day, especially after 1pm.
Limit the time spent in bed to actual time sleeping.

Heather explains that good quality sleep is not only important for patients, but for caregivers as well. Sometimes, transplant can be more stressful for the caregiver, and if they don't take care of themselves, it will harm their ability to help their patients.

Resources:

Shut Eye App: https://www.shuteye.ai/

Somryst App: https://www.somryst.com/

Calm App: https://www.calm.com/

Heather Jim's Bio: https://moffitt.org/research-science/researchers/heather-jim/

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:

Pharmacyclics: https://www.pharmacyclics.com/

Janssen: https://www.janssen.com/

Kadmon: https://kadmon.com/

Sanofi: https://www.sanofi.com/

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Or visit our website at https://www.nbmtlink.org/

Basics Of Chronic Graft Versus Host Disease

Marrow Masters

07/30/19 • 15 min

• Definition of acute and chronic Graft Versus Host Disease (GVHD)
• Examples of organs affected by both acute and chronic GVHD
• Organs covered from head to toe
• Fatigue
• Your risk of getting cGVHD
• Importance of staying in touch with your transplant center
Click here to visit the Karmanos Cancer Center
• Resources available through the nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Or visit our website at https://www.nbmtlink.org/

Navigating the Emotional Weight of CAR T-Cell Therapy

Marrow Masters

11/15/24 • 29 min

In this podcast episode, we talk to Liz Muenks, a licensed psychologist and director of the Onco-Psychology Program at the University of Kansas Cancer Center. We discuss the psychosocial and emotional challenges faced by patients undergoing CAR T-cell therapy, a groundbreaking treatment for cancer, and how these experiences affect both patients and caregivers.

Liz explains that patients typically enter CAR T-cell therapy after exhausting other treatment options, which leads to a heavy emotional burden. Many patients feel like they've "failed" previous treatments, a term that Liz finds problematic but acknowledges is often used. The pre-treatment phase is already filled with anxiety, depression, and fear. While some patients approach CAR T with hope and optimism, others carry a deep skepticism based on their past experiences. Liz notes that there are optimists, pessimists, and realists among patients, each bringing a different mindset to this journey.

Liz highlights the societal pressure on cancer patients to maintain a positive attitude, which can add stress. She dispels the myth that a positive mindset is required to beat cancer, emphasizing that embracing all emotions, including fear and worry, is crucial to managing the cancer journey. While uncontrolled anxiety or depression can negatively impact outcomes, Liz reassures that patients can still succeed in their treatment even with emotional ups and downs.

The conversation also touches on the unique side effects of CAR T-cell therapy, which differs from traditional treatments like bone marrow and stem cell transplants. While patients often feel relieved that the chemotherapy before CAR T is less intense, they are faced with neurological risks and the potential for serious side effects like cytokine release syndrome. However, these severe side effects affect a minority of patients.

Caregivers, Liz stresses, play a vital role, especially as CAR T is increasingly being done on an outpatient basis. She advises caregivers to lean on their medical teams for support and never hesitate to ask questions. Caregivers often feel immense pressure, but Liz encourages them to recognize that they are not alone in this journey. Support networks include therapy groups, on line resources such as nbmtLINK.org (and many others) and on-call specialists , all available, offering caregivers support in sharing their burdens and finding reputable resources and guidance.

Finally, Liz discusses the psychological challenges that linger after CAR T-cell therapy, especially the anxiety of cancer recurrence. Many patients struggle to move forward, constantly worrying about how much time they have before the disease returns. While some can compartmentalize these fears, others need ongoing psychological support. Liz also shares stories of patients who were initially hesitant about CAR T due to difficult past treatments but later experienced positive outcomes, reflecting the progress being made in this groundbreaking cancer therapy.

This season is made possible thanks to our sponsors:

Kite, a Gilead company: http://www.kitepharma.com/

and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Or visit our website at https://www.nbmtlink.org/

Groundbreaking CAR T Clinical Trials Explained by Dr. Hemant Murthy

Marrow Masters

11/15/24 • 19 min

In this interview, we sit down with Dr. Hemant Murthy, a professor of medicine in the division of Hematology/Oncology at Mayo Clinic, to explore the groundbreaking potential of CAR T-cell therapy and the crucial role clinical trials play in advancing cancer treatments.

Dr. Murthy begins by emphasizing the importance of clinical trials in hematology, reminding us that many of today’s standard treatments—like oral medications for chronic myeloid leukemia or advanced therapies for multiple myeloma and acute myeloid leukemia—are the result of past clinical trials. These studies not only push boundaries but also provide a clearer future path for treating diseases.

CAR T-cell therapy is a significant part of this evolving landscape. Initially viewed as a last resort for patients with limited life expectancy, CAR T- cell therapy has now become a transformative therapy, with trials showing such strong results that it’s being used earlier in treatment regimens, sometimes even before other established procedures like bone marrow transplants. The therapy, which re-engineers a patient’s own immune cells to fight cancer, has been particularly effective for conditions such as lymphoma and multiple myeloma. Dr. Murthy explains how this shift in timing and application has dramatically changed patient outcomes, allowing those once facing hospice care to now look forward to longer, more hopeful lives.

Dr. Murthy also highlights the meticulous approval process for CAR T- cell therapies. He discusses how several CAR T products, such as axicabtagene ciloleucel and lisocabtagene maraleucel, have been approved for diseases like diffuse large B-cell lymphoma and multiple myeloma due to their success in clinical trials. Importantly, he notes that these treatments are continually evolving, and future trials may yield even better results for more patients.

For patients interested in learning about clinical trials, Dr. Murthy stresses the importance of consulting with their oncologists. Trials are essential in driving the next wave of treatments, and they provide an opportunity to explore innovative therapies. He advises patients to ask about trial phases and the logistics involved, such as the number of study visits or the need to stay near treatment centers. Resources like clinicaltrials.gov can also help patients find reputable studies.

Looking to the future, Dr. Murthy shares his excitement about emerging therapies, including cellular treatments for solid tumors like melanoma and sarcomas. He talks about innovative approaches like gene editing and the use of different immune cells, such as natural killer cells, to make treatments safer, faster, and more effective. As clinical trials continue to expand, they offer hope for addressing even more cancer types and improving patient care.

In closing, Dr. Murthy reflects on how far cancer treatments have come and expresses optimism about the ongoing impact of clinical trials in shaping a brighter future for patients. He encourages patients to ask questions and stay engaged with their healthcare providers to explore all potential treatment options.

ClinicalTrials.gov: https://clinicaltrials.gov
Mayo Clinic Cancer Center: https://www.mayoclinic.org/departments-centers/cancer-center

This season is made possible thanks to our sponsors:

Kite, a Gilead company: http://www.kitepharma.com/

and Bristol Myers Squibb's CAR T support services program:https://www.celltherapy360.com/

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Or visit our website at https://www.nbmtlink.org/

Season 11 Trailer: Survivors Who Thrive

Marrow Masters

08/28/23 • 3 min

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

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

Or visit our website at https://www.nbmtlink.org/

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