Lymphomania

The story of being Diagnosed & Living with Follicular Lymphoma. The following is a Q&A with The Follicular Lymphoma Foundation from Dec. 2026, shortly after i completed CAR-T Therapy at Stanford Medical

Hi, I am Brandon and I live in the United States. I am Stage 4.5 and was diagnosed in August 2020

About Me

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. 

Finding out I have FL

I found a lump on my right thigh and was worried it was 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). It 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. 

Treatment & Support

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, the Schlenker Family (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.

Challenges

I worked through treatment for the first 5 years of my illness. I finally took time off 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.

*COPIED MEDICAL DEFINITION -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.  

INTERVIEWER: It was like I didn’t exist. Can you expand on this – I’m not sure it is clear what you mean?

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. 

Triumphs: After 5 years, I am 100% cancer free according to PET Scan and Bone Marrow Biopsy. 

Guidance to Others

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.

Brandon Note: This has been edited for clarity from what was submitted to FLF in December since my brain is working better and I am not editing it on a smartphone.