(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/
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