Hi, I am Brandon and I live in the United States. I am Stage 4.5 and was diagnosed in 2020.
I am 40 and live with my aunt and uncle in Northern California. I work in Event Management, running events such as weddings, memorial services, church events, and various celebrations. One hobby I love is kayaking on the Russian River where I grew up. I love being in nature.
I found a lump on my right thigh and was worried it would be a hernia. I went to the doctor and discovered I had a cancerous lymph node. This was diagnosed via a needle biopsy. After diagnosis, it felt heavy. Like a shadow descended over my life. I have described it as an event horizon that could not be passed through again that divided my life. I can never go back to before my diagnosis. I deal with it through my Buddhist practice of 17 years (12 at the time of diagnosis) which has helped me keep my emotions balanced and to stay positive.
All of my setbacks such as drugs causing negative responses or not working led me to get into a clinical trial for CAR-T, which has left me 100% cancer free.
In 2022 I went through 6 rounds of chemotherapy, however I experienced a relapse this year and subsequently, I have just completed CAR-T Therapy (Yescarta) at Stanford Medical.
My main supporters through treatment have been my friends, my best friends Karl and Stephan and their parents and sister. My Aunt Lisa, who has let me live with her and my uncle this last year, and my mom who acted as my caregiver during CAR-T.
The LWFL group was a lifeline helping with lots of information on treatments and support when in treatment. I then found myself supporting other members by sharing my journey and experiences.
The Follicular Lymphoma Foundation (FLF) was set up, and I have been a super supporter for the charity for some time giving the LWFL Facebook page a voice to the charity.
I worked through treatment for the first 5 years of my illness. I finally took time off work for treatment and recovery after getting into a clinical trial at Stanford Medical. During this treatment, I experienced a side effect called ICANS that left me disoriented for 2 days.
(ICANs stands for Immune Effector Cell-Associated Neurotoxicity Syndrome, which is a potentially serious neurological side effect of advanced immunotherapies like CAR T-cell therapy, caused by activated immune cells entering the brain and causing inflammation, leading to symptoms from confusion and tremors to seizures or coma).
It was like I didn’t exist. I have little to no memory of the time ICANS was affecting me. I came to with a neural net glued to my head to make sure I wasn’t having seizures.
Living with FL has made me more aware of potential risks to my health that are out of my control and have since discovered that a lot of people can be careless when it comes to COVID safety and invisible disabilities, which is disappointing.
After 5 years, I am 100% cancer free according to PET Scan and Bone Marrow Biopsy.
There is hope. Even setbacks in treatment can represent the opportunity to gain access to clinical trials. CAR-T therapy may have made it, so I never have to worry about this illness ever again.
One thing I have learned in my 17 years of Buddhist practice is that shared experiences can help other overcome their own obstacles; they just need to hear it can be overcome. Hope is a powerful medicine.
