Brandon, 40 from Northern California shared his FL story back in December 2025, now six months on he shares his story and perspective of being a part of a clinical trial at Stanford University.Â
Read Brandon’s earlier story here:Â
Following a PET scan in December 2022 I was given the all clear, and I was able to get my power port removed. Over the next couple years, I lived my life with a new kind of drive. I had earned my life and I was going to live it. I changed careers to event management and planning in the non-profit sector. I made the determination to pursue the most meaningful life possible. I began organizing Blood Drives at work in coordination with Vitalant. Even with all the blood I have received, I have rallied people to donate 3x that and plan to keep doing it. Just one unit can save a life.
In August of 2024, I started feeling bumps in places like my neck, armpits, and groin. Over the next few weeks, my numbers started going down. It was time to begin treatment again. Because it had been a relatively short period since BR (Bendamustine and Rituximab), my Oncologist wanted to pursue a different path. Revlimid + Obinutuzumab (OB) is prescribed. Now, OB is rough. Its so rough they only give you 10% of a dose the first round. At 1% I had anaphylaxis. So Revlimid + Rituximab (nongeneric this time) and Prednisone (they have to do something about how this tastes). After 6 months of that, PET Scan shows no results. No Change in size. My blood test results are better but they’re not good.
My Oncologist wants me to pursue a Clinical Trial at Stanford for a form of  CAR-T. So I was getting a treatment that worked, but they were still figuring out the best way to help patients recover from it. The risks were high, but a dear friend of mine that battled cancer for many years told me that if the opportunity comes to get in a clinical trial, I should take it. Trials had given her many years more than the doctors had originally predicted.Â
I had a barrage of blood tests and prep for the procedure. PET Scans, a colonoscopy, and most importantly, I had to prepare to put my whole life on hold. The Clinical Trial required a 24 hour caregiver during the treatment. A few weeks before the procedure, I underwent apheresis, where they collected 1,000,000 T-Cells from my blood over 4 hours with a line going out one arm, filtering the cells, warming the blood back up, and back in the other hand. Back home to prepare.Â
I travelled to Palo Alto with my Mom who would be my caregiver for the recovery period, but more importantly, we were put up in a nice hotel with a kitchen near Stanford and my Mom was able to be there the whole time while I was in the hospital. I had to do 3 days of depleting Chemotherapy to prepare for the cell transplant. That was Wednesday, Thursday, and Friday and then I rested for the weekend. I was admitted to Stanford Medical on Sunday afternoon. That night, I watched a movie, had the Braised Short Rib Dinner, exquisite, and finished the night with some Stanford’s Famous Custard. Might be my last meal. I receive a once over physical and Montreal Cognitive Assessment as a benchmark (congrats – healthy brain function for someone my age and education level). Â
The next day, I have a nice breakfast with decaf coffee and a nutrition shake. The cells arrive and they show me this pink bag of goo. We begin the infusion. It takes 10 minutes. It’s all over. I ordered a burger for lunch. Grass Fed Beef. (People complain about hospital food?) What seems impossible happens. Every lump on my neck, groin, armpits are gone within days. The pink bag of goo did its job. Now we wait to make sure that is all it does.  Have I pooped? This question comes up a lot from nurses. It is important. They are tracking it as well as how much I pee, the colour of both and my weight. I pass the time reading, watching shows, playing Nintendo, riding a recumbent stationary bike they have, books on tape, and eating my way through the menu. It’s on the house, but eventually the food starts to taste the same. I have lost a couple pounds. My Doctor says its time to reduce some of the medications I have been getting. Specifically, Corticosteroids that have been preventing inflammation. Â
The next morning, my clinical team assembles. The lead is asking me a series of questions and I find the answers just won’t come. I’m talking nonsense. It’s 1776. I don’t even think of it as me. This is the beginning of a side effect called ICANS (Immune Effector Cell-Associated Neurotoxicity Syndrome), which I was warned in advance may happen and that can be dangerous if not monitored closely. Because of this I was given a CT scan straight away and seen by the Neurology team. Â
A couple days later, I was aware enough to order dinner, even if I struggled a bit to read the menu. My nurses were incredible and I had an MRI that showed everything was all clear of potential damage like stroke or seizure from the ICANS. I was ready to head to my hotel nearby. I needed a change of scenery. I was tired of this grey hospital room. The beeping. The constant poking, measurements, the taste of saline in my mouth from the constant flushes. The cherry flavoured Zofran was a nice surprise. Good food gets boring when it’s all you have to eat. The couple of times I had my mom bring me outside food, it was cold by the time she could get to me, so its appeal was not great. My room had a big bay window but the only view was construction tarp and a rainy November sky. I am amped up on steroids. I have been in there for 3 weeks, nearly a week since any sign of ICANS. I miss my dog more than anything. I catch a clip of an old Charlie Brown special of when he adopted Snoopy and I absolutely started bawling. My nurse is worried, but I am fine. just feeling my feelings. Â
On December 1st, I have a Bone Marrow Biopsy, and on the 2nd, I went in for a PET Scan. I have a final check in on the 3rd. PET Scan results show 100% cancer free. Bone Marrow Biopsy shows the same. Now I am home, rebuilding my life, and my immune system. I am enjoying time off for recovery. It is the first time I have taken time off throughout my entire time with FL (a 2 week hospital stay does not count). My total time in Palo Alto was Oct. 27 (check in at Hotel) – Dec. 3 (Final PET Scan).
I deal with my FL 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 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. Â
There is hope. Even setbacks in treatment can represent the opportunity to gain access to clinical trials. I understand from researchers that CAR-T seems to be showing longer remission for some patients. So, as far as I am concerned CAR-T therapy may have made it, so I never have to worry about this illness ever again.Â
