Marrow Masters

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:

1. Set aside an hour to wind down before bed (this includes turning screens off!)
2. Only go to bed when you start to feel sleepy.
3. If you can't fall asleep in 20-30 minutes, get up and do something boring.
4. Use an alarm clock to get out of bed at the same time every day.
5. Use your bed and bedroom only for sleep and sexual activities.
6. Limit naps during the day, especially after 1pm.
7. 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/

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

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

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

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/

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

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

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

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/

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

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

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

(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/

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

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

The nbmtLINK YouTube Page can be found