Terena Shares Her CAR T-Cellular Therapy Journey
11/15/24 • 28 min
(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
(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
Previous Episode
Dr. Hassan Alkhateeb: Who, What, When and Why of CAR T
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
Next Episode
Navigating the Emotional Weight of CAR T-Cell Therapy
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/
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
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