In this episode of Marrow Masters, we hear the journey of married couple Dave and Laurie Brock, as they share their experience with CAR T-cell therapy— one Dave very recently underwent. The Brocks provide an inspiring and honest account of navigating this complex treatment process. Dave, diagnosed with multiple myeloma in 2015, had an eight-year remission following a stem cell transplant. When he relapsed earlier this year, his doctor, Dr. Abdullah at the University of Kansas Medical Center, recommended CAR T-cell therapy, which had just been FDA-approved for patients in his position. Dave recalls his surprise that what once felt like a “futuristic” option was now available and could be pursued immediately.

As Dave began CAR T- cell therapy, he leaned on advice he received early in his treatment: maintain a positive attitude, be informed, and work closely with his healthcare team. Physical fitness played a crucial role in his journey, allowing him to hike and stay active, which he believes aided his recovery. However, the therapy wasn’t without challenges. He experienced significant fatigue, developed Bell's palsy as a side effect, and had to constantly monitor for signs of neurotoxicity.

Laurie is Dave's "care partner," not "care giver." And she describes the intensive nature of navigating CAR T- cell therapy. She monitored Dave around the clock, prepared their home with stringent health protocols, and managed the complexities of his medication and appointments. Laurie’s commitment required self-sacrifice; she isolated from family and even stopped going to the gym to protect Dave from exposure to illness. However, she also found unexpected joy in the time spent alone with Dave, as they grew closer through shared activities and humor.

Both Dave and Laurie emphasize gratitude—appreciating their medical team, the support of their community, and the positive outcomes of CAR T-cell therapy. Their care team was deeply invested in their success, with doctors even celebrating with them on day 31 when test results confirmed Dave was in remission. Dave reflects on how fortunate he feels for his proximity to the clinic and his medical staff’s expertise, acknowledging the importance of clinical trials and the contributions of previous patients in advancing treatments like CAR T.

The episode closes with Dave’s reminder: we’re all in this together, underscoring the value of community, support systems, and the role that clinical trials play in the ongoing advancements in cancer treatment. He also shares his gratitude for anyone who's participated in a clinical trial. Without them, he wouldn't have had the opportunity to undergo this cutting-edge treatment.

This season is made possible thanks to our sponsors:

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

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

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

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

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

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

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

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

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

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

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

More:

• ClinicalTrials.gov: https://clinicaltrials.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/

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

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

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

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

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

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

This season is made possible thanks to our sponsors:

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

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

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

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

(Disclaimer: This episode contains advice on nutrition and lifestyle. Always consult your health care team regarding your personal circumstances).

In this episode, we speak with Terena from Tampa, Florida, about her journey with CAR T-cell therapy, covering her experiences from diagnosis through recovery and remission. Diagnosed with mantle cell lymphoma, a type of non-Hodgkin’s lymphoma, in September 2019, Terena endured years of misdiagnosis as her initial symptoms, such as severe hot flashes and night sweats, were attributed to menopause. It wasn’t until a bone marrow biopsy that she was correctly diagnosed.

Following her diagnosis, Terena underwent extensive testing, including specialized genetic tests like FoundationOne Heme and clonoSEQ, which helped tailor her treatment plan. She started on a combination therapy of Revlimid and rituximab before transitioning to CAR T-cell therapy in December 2020. She shares how the preparation for CAR T involved rigorous health screenings, including mental health assessments and apheresis, to collect her T cells.

Terena details the intensive hospital stay during CAR T, where she faced several challenging side effects like cytokine release syndrome, neurotoxicity, and significant weight loss due to radiation-induced nausea. Despite these challenges, she avoided some severe complications such as seizures or viral reactivations, thanks to preemptive treatments and vigilant care. Her remission came three months post-treatment, a milestone that was both a relief and a testament to the effectiveness of the therapy.

The cost of CAR T therapy was staggering, with an itemized hospital bill exceeding a million dollars. Fortunately, her insurance (including Medicare) covered a significant portion, though she emphasizes the importance of being financially prepared for such high medical expenses.

Post-remission, Terena has made significant lifestyle changes to support her health. She follows a strict anti-inflammatory diet, avoiding GMOs, processed foods, and conventional dairy and meat products. She shares her regimen of juicing, incorporating nutrient-rich foods like organic berries, avocados, and cruciferous vegetables. Additionally, she has overhauled her home environment, switching to non-toxic cleaning products and cosmetics, using water and air filters, and incorporating wellness practices like infrared sauna therapy and regular exercise.

Terena’s commitment to reducing environmental toxins extends to every aspect of her life. She no longer uses products with harmful chemicals, such as nail polish or hair dye, and relies on digital tools to evaluate the safety of her food and personal care products. Her integrative health approach, combining conventional and holistic practices, plays a crucial role in maintaining her well-being.

Her story is not only about overcoming physical challenges but also about the emotional and logistical aspects of undergoing such intensive treatment. From pre-paying bills and preparing meals in advance to relying on friends and family for transportation during her recovery, Terena’s experience highlights the need for a strong support system. Her openness and detailed sharing of her journey are bound to help others navigating similar paths.

Links:

• Gluten Free Scanner App: https://glutenfreescanner.app/
• EWG's "Clean Fifteen" List: https://www.ewg.org/foodnews/clean-fifteen.php
• EWG's "Dirty Dozen" List: https://www.ewg.org/foodnews/full-list.php
• FoundationOne Heme - foundationmedicine.com
• clonoSEQ - clonoseq.com

This season is made possible thanks to our sponsors:

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

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

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

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

In this episode, we talk with Dr. Hassan Alkhateeb, a hematologist from the Mayo Clinic Transplant Center, about CAR T-cell therapy. Dr. Alkhateeb walks us through the basics of this groundbreaking immunotherapy and how it has evolved as a treatment option for various cancers. CAR T-cell therapy involves collecting a patient's T cells and re-engineering them in the lab to target and destroy cancer cells. This therapy has shown promise in treating blood cancers like B-cell acute lymphoblastic leukemia (ALL), non-Hodgkin lymphoma, multiple myeloma, and even solid tumors like synovial sarcoma.

The origins of CAR T therapy date back to 2011, with the first FDA-approved product arriving in 2017. Since then, the therapy has rapidly expanded to treat more conditions. Dr. Alkhateeb explains that while CAR T is often seen as a last-resort treatment, especially in cases where patients have not responded to other therapies, early referral to CAR T specialists is becoming more common. This shift can improve outcomes, as earlier intervention allows for better preparation and potentially more effective treatment.

He outlines the evaluation process for CAR T therapy, which is similar to that for bone marrow transplants but focuses on assessing the patient’s overall health and suitability for cell collection rather than matching a donor. The cells are then modified in a lab, a process that typically takes two to three weeks. Dr. Alkhateeb notes that manufacturing failures are rare, affecting about 3% of cases.

Post-treatment, patients must be monitored closely for side effects such as drops in blood counts, risk of infections, and specific complications like cytokine release syndrome (CRS) and neurotoxicity. These side effects can be severe but are generally manageable with the right care. Caregivers play a crucial role in this process, especially since patients need to stay near the treatment center for an extended period.

Dr. Alkhateeb also shares inspiring success stories, including one patient with a particularly challenging form of leukemia who achieved remission and is now back to living a normal life. This highlights the life-saving potential of CAR T therapy and its impact on patients who otherwise have limited options.

As we conclude, Dr. Alkhateeb emphasizes the importance of early referrals to specialized centers with experience in CAR T therapy. He expresses optimism about the future of cancer treatment, noting that advancements in this field are providing new hope for patients and their families. We are grateful for his insights and encourage listeners to stay informed about emerging therapies like CAR T, which are transforming the landscape of cancer care.

Links:

• Mayo Clinic Transplant Center: https://www.mayoclinic.org/departments-centers/transplant-center
• CAR T-Cell Therapy Information: https://www.cancer.gov/about-cancer/treatment/types/immunotherapy/car-t-cell
• FDA Approval Information on CAR T Therapies: https://www.fda.gov/news-events/press-announcements/fda-approves-first-car-t-cell-therapy

This season is made possible thanks to our sponsors:

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

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

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

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

Today we interview Lori Dear, a registered nurse and transplant coordinator in the adult Blood & Marrow Transplant Program at Corewell Health in Grand Rapids, Michigan. Lori shares her deep insights into the CAR T-cell therapy process, a groundbreaking treatment for certain cancers, focusing on the patient experience and the critical role of caregivers.

Lori explains that CAR T-cell therapy is highly personalized, with no "cookie-cutter" approach. A diverse interdisciplinary team, including physicians, nurses, pharmacists, and various specialists, collaborates to guide patients through the process, from eligibility testing to treatment and recovery. She stresses the importance of preparing for the CAR T process by researching the therapy and arranging for a trustworthy caregiver, who will play a crucial role in managing care for up to 12 weeks after infusion. Lori points out that caregivers often include spouses or close friends, but emphasizes that anyone chosen should be reliable and available 24/7 for an extended period.

Eligibility for CAR T therapy involves various health screenings, including heart, lung, and kidney function tests, to ensure a patient’s fitness for the treatment. The goal is to minimize risks and optimize outcomes. Lori also discusses the importance of being near the treatment center, typically within one to two hours, particularly during the critical post-infusion period.

Side effects like Cytokine Release Syndrome (CRS) and ICANS (neurotoxicity) are potential complications, and caregivers play a vital role in recognizing early symptoms, such as fever or cognitive changes. Lori advises patients and caregivers to stay vigilant and report even subtle signs of illness to the medical team. She reassures that the healthcare team is ready to act quickly in the event of complications, underscoring the importance of a collaborative relationship between caregivers, patients, and staff.

Lori also addresses secondary concerns, such as financial toxicity, explaining that financial coordinators work with patients to navigate insurance coverage and secure additional assistance if needed. She mentions the psychological strain patients may experience, emphasizing the normality of feeling overwhelmed and the value of a strong support network.

As the episode wraps up, Lori shares a heartwarming story of a patient who, after multiple treatments, including a transplant, faced discouraging PET scan results. With the center and Lori's support and encouragement to explore CAR T therapy, the patient proceeded with the treatment and, despite some complications, has celebrated three more Christmases with his grandchildren. This story encapsulates the hope and life-changing potential of CAR T- cell therapy.

This season is made possible thanks to our sponsors:

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

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

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

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

In season 15 of the Marrow Masters podcast, we will focus on CAR T cellular therapy. This innovative and life saving treatment is gaining momentum and has become a first line course of treatment in recent years. What does CAR T have in common with more traditional transplants? How does it differ? What is the first 100 days like? And how have clinical trials brought us to this moment?

We will hear from physicians at the heart of this cutting-edge therapy, from survivors, and from other members of the care team, including a nurse and psychologist.

Season 15 of the Marrow Masters podcast is sponsored by Kite, a Gilead company, and Bristol Myers Squibb.

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

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

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

In this podcast, we welcome Dr. Jose Flores, an expert in sexual and reproductive medicine at New York's Memorial Sloan Kettering Cancer Center. We dive deep into the often challenging but crucial topic of male sexuality, particularly in the context of cancer treatment and graft versus host disease (GVHD).

Dr. Flores begins by distinguishing between sexual dysfunction and erectile dysfunction (ED). He emphasizes that sexual dysfunction encompasses various issues beyond just achieving erections, such as ejaculation problems, orgasm issues, decreased sex drive, and changes in penile shape. This broader understanding is essential when discussing sexual health with patients.

The prevalence of ED after cancer treatment is notably high, with up to 60-70% of men experiencing it post-chemotherapy, and even higher rates following pelvic surgery, specifically. Low testosterone levels also contribute significantly to sexual dysfunction, particularly after treatments targeting the pelvic area.

A critical aspect of addressing ED is breaking the wall of silence around it. Dr. Flores stresses the importance of open communication between patients and healthcare providers. Initiating conversations about sexual health can lead to better assessments and treatments. He outlines the initial steps in diagnosing ED, including patient questionnaires and lab tests, and underscores the need for healthcare providers to proactively ask patients about their sexual health.

The discussion then shifts to the impact of GVHD on sexual function. Dr. Flores notes that about 70% of men post-bone marrow or stem cell transplant suffer from low testosterone and ED. Unfortunately, without intervention, these issues do not typically resolve on their own. Patients must seek help to explore treatment options.

Dr. Flores explains the ED treatment model, which follows a stepwise approach. The first step includes lifestyle modifications and the use of PDE-5 inhibitors like Viagra and Cialis. If these are ineffective, injection therapy is the next step, followed by mechanical aids like penile pumps and, as a last resort, penile implants.

Myths and realities of PDE-5 inhibitors are addressed, clarifying that these medications require proper usage, including an empty stomach for Viagra and sufficient time for absorption for Cialis, along with sexual stimulation to be effective. Proper education on these aspects can significantly enhance their effectiveness.

Low testosterone, particularly after cancer treatment, is another major topic. Dr. Flores discusses the complexities of testosterone replacement therapy (TRT), including potential risks like polycythemia, effects on fertility, and the necessity of screening for conditions like sleep apnea and prostate cancer before starting treatment. He advises patients to preserve fertility before undergoing cancer treatments and outlines options for those with compromised fertility post-treatment.

The conversation concludes with Dr. Flores urging patients to be proactive about their sexual and reproductive health. He highlights the importance of seeking specialized care and the positive impact it can have on overall quality of life. Throughout the discussion, Dr. Flores's compassionate approach underscores the importance of addressing these sensitive issues openly and effectively.

Memorial Sloan Kettering Cancer Center: https://www.mskcc.org

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

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

This season is made possible thanks to donations from Syndax and Incyte.

https://syndax.com/

https://incyte.com/

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