Brandon’s Story
Hi, I am Brandon and I live in the San Francisco Bay Area. I am Follicular Lymphoma Stage 4.5 and was diagnosed in August 2020. That means it is throughout my body and has infiltrated into my bone marrow, and was beginning to enter part of my intestines. As of my last PET Scan, I am cancer free thanks to CAR-T Therapy (YesCarta) in a clinical trial at Stanford Medical.
About Me
I am 40 and live with my aunt and uncle in Northern California. I am one of 5 kids. My father struggled with addiction. He was a veteran, as was his father. I am currently the Hospitality Manager at the former Chaplains Church where my Grandfather was Stationed. Now it is a civilian run Church and Historic Building that I am a proud caretaker for. Growing up, I learned about Christianity from my Grandmother, Dora. My grandmother taught me to read with children’s bible stories, but I never went to church, so faith was not a big part of my life. My Father, a former Alter Boy and recovering Catholic, was not keen on religion. When I was in High School, I met my best friends, The Brothers. Their family practiced one of the many forms of Buddhism. This was a form from Japan, introduced to the US in the 1960s by immigrants and wives of service men. It emphasised Universal Enlightenment by understanding Cause & Effect and our emotional state’s relationship to it. Most important to me was that it existed free of priests and hierarchy. Its leaders were there to help their community, not control them. The more I learned about it, the more it made sense. About 17 years ago, I began my own Buddhist Practice. My Faith helped recognize a strong and persevering spirit I had the potential to draw out. The Spirit of Never Give Up. Win or Lose, Keep Moving Forward.
Finding out I have FL
In late July of 2020 I found a lump on my right thigh and was worried it was a hernia. My Primary Care Doctor mentioned he was worried it was an enlarged lymph node but we wanted to be sure and called for a CT Scan. Once the results came in, he called me and told me it was the lymph nodes in the area and they wanted to get a better idea of what kind of possible lymphoma it might be. We scheduled a needle biopsy (a needle is inserted into the area and takes a sample the size of a grain of rice. The local anesthetic hurts more than the procedure). The Biopsy confirmed it was Lymphoma. After diagnosis, it felt heavy. like a shadow descended over my life. For a week I just went through my day to day. I had cancer. I was only 34. I had just moved into my own apartment without roommates for the first time. I was crushed. It wasn’t until I spoke to my Oncologist and learned more about my situation that I stopped feeling as scared. I learned what kind of lymphoma I had and I learned I could manage the illness for many years. Some treatments had the potential to give people years of remission. Follicular Lymphoma is a slow growing (usually) blood cancer that affects the B-Cells of the Immune System.
At this time, the Lymphoma was isolated to my Right Inguinal Lymph Nodes (Stage 1). It was very uncomfortable (about the size of a golf ball). Targeted radiation was prescribed. Shortly after my 35th birthday I had 2 doses of radiation, set to smooth jazz versions of classic rock music while wearing a very uncomfortable kimono/smock thing. I saw immediate results from the radiation. The lump that was hard as a rock became soft and squishy within hours. After a couple of days from treatment, it was gone. And I moved on with my life. I was determined to live. Watch & Wait. In July of 2021, I adopted a puppy as a reward to myself for getting through radiation and to keep me company.
Round 2
I was good for about a year. Then I began to feel the occasional bump here and there. In October, one popped up on my Left Inguinal area and did not go away. Now it’s in multiple areas(Stage 2). By December, the Lymph Nodes on my neck are sticking out like Neck Bolts on Frankenstein’s Monster (Stage 3). I’m getting tired easily, and fall asleep at the drop of a hat. I lost whole days from sitting down and waking up hours later. I got these horrible headaches, the kind that make you want to just sit down and die. Keep going. Gears are moving with the insurance. They basically want you on death’s door for approval. By Spring, the Lymphoma has entered my bone marrow and my levels are plummeting (Stage 4). I am outfitted with a power port and in early June I began BR Chemo Therapy (Bendamustine + Rituximab) 2 days every 4 weeks for 6 rounds. My best friends, The Brothers, as well as their parents come and drive me to chemo. Along with the Chemo Therapy Drugs comes a line of premeds. Zyrtec, Tylenol, Pepcid, Decadron (steroid), and Benadryl. There is a reason you don’t take stimulants and depressants together. But in my case, the mixture of the 2 is the only thing holding back full anaphylaxis and shock. Rituximab and its bio similars (generics) and I don’t mix. Instead of choking to death, I am crawling out of my skin. I am fortunate to have a good heart because it was put to the test. Those days lasted 7-9 hours, depending on how I reacted. The Rituximab has to be given slowly and increased every 30 mins. 50-75-100-125-150-175-200-225 *shock* *anaphylaxis*. Stop, flush, pepcid, Decadron, Benadryl. Start again. 1000 ml to get through.
In mid July, I felt a sore throat, but it’s not too bad. I made a Dr appointment as soon as possible to get it checked just in case. While I am there, I ask the Dr to order some labs for me, just in case. Complete Blood Count is the one I am curious about. This is not my normal Dr, so he is giving me a “this guy reads too much web MD” attitude. I got home, made some lunch, and my Oncologist and GP were blowing up my phone telling me to check into the Emergency Room NOW. Not knowing what to expect, I asked my neighbor for a ride to the ER and for another to watch my dog. I was hospitalized for fungal pneumonia, severe anemia (4.7 Hemoglobin) and a Pleural Effusion (chest cavity full of fluid). I had my own room, my boss dropped off a bag of stuff for me (including my laptop because nobody else knew how to do my job so I worked from my bed). The food was not too bad. Not spectacular. They sent me home after the first week.
By Monday I am back in the hospital, this time with a roommate. Thankfully this time, I suspected they might keep me for a while, so I am able to better prepare, including a bottle of Sol Food hot sauce. I had a Pneumothorax (air bubble in the chest cavity) that had hidden behind my lung in scans, and had to have a chest tube put in between my ribs. It hurts way more going out than in. I had to have a colonoscopy, which is one of the worst nights of my life. I had to stay up all night drinking a gallon of what tasted like seawater. After my Colonoscopy, they moved me to a new room with a new roommate. I had my friend bring me a burrito from my favorite spot after I was done with that because hospital food is not the way to end a fast for a colonoscopy. Many apologies to my hospital roommate that was on a clear diet. The smell must have been agony more than the broken leg. They had to give me 11 units of blood over the 2 weeks I was in the hospital.
I got out of the hospital just in time for my next infusion. BR Chemo usually hits me a couple days later. The infusion was Thursday/Friday and by Sunday, I was sleeping all day. Monday, I worked remotely to keep my income. Once I got to the last couple infusions, I began to recover quickly. I was OK to drive myself to my appointments. I felt like things were going in the right direction. I had a really close call but had come through it. There were a few instances where my numbers were not high enough for Chemo, so the appointment would get pushed a week or 2. My last infusion of BR was on Christmas Eve 2022. I am thankful for my dog. On the weekends after infusions, she would cuddle up with me all weekend. She could tell something was wrong. A few months later a PET scan gave me an all clear and I was able to get my power port removed.
A Reprieve
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. After realizing I was under appreciated at my job and needed to move on to grow my career. I changed careers to event management and planning in the non-profit sector, something I had gotten a feel for at my previous job. 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.
Round 3
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, my Oncologist wanted to pursue a different path. Revlimid + Obinutuzumab 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 (non generic this time) and Prednisone (they gotta do something about how this tastes).
After 6 months of that, PET Scan shows no results. No Change in size. HBG and Platelets are better but they’re not good. My Oncologist wants me to pursue a Clinical Trial at Stanford. It’s being run by Kite, a division of Gilead Pharmaceuticals. The treatment it called YesCarta and the study was on the best practices for recovery from 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. They had given her many years more than the doctors had originally given her.
Clinical Trial and Prep
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. Kite put me up in a nice hotel for 2 nights down in Palo Alto and paid for 3 meals. Back home to prepare.
At this point, I ran a GoFundMe and many friends, family, and strangers stepped up, helping me buy medical equipment, extra cleaning supplies, gas, games to play in the hospital, and most importantly, food. One of the most expensive things has been good food that is easy to prepare or is from a safe restaurant. The first time I went through Chemo, I lost 60-70 lbs. This time, I kept it to 25 (I already found it again). I also had an added expense that if I used medical cannabis, it would be gummies or other nonsmokables, from a club for food safety. Nothing works better than cannabis for nausea. But buying is much more than my own homegrown, so that was a big expense.
Then came the day. I traveled to Palo Alto with my Mom who would be my caregiver for the recovery period, but more importantly, Kite put us 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. 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. Receive a once over physical and Montreal Cognitive Assessment as a benchmark (congrats. healthy brain function for someone my age and education level). Have I pooped?
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 color of both, 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. Its 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 (Dexamethasone) that have been preventing inflammation. 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. This is the beginning of a side effect called ICANS (Immune Effector Cell-Associated Neurotoxicity Syndrome). I don’t even think of it as me. I wasn’t there. They were talking to the CAR-T Cells as far as I am concerned. I have flashes of time from it. They are wheeling me down around the hospital. They are taking out my earrings. I am in the CT scanner. Then I am waking up in my bed the next day with a mesh glued to my head. By the end of the day Neurology is satisfied that I have come out of the ICANS. I slept poorly the next night and so the following day I was so exhausted I just wanted to sleep. I was unresponsive and they determined I was in ICANS again. Within the day, I was awake and talking. Aware enough to order dinner, even if I struggled a bit to read the menu.
My nurses were incredible. A couple days later, 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 gray hospital room. The beeping. The constant poking, measurements, they 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 caught 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.
Finally the day comes when I can finally leave the hospital. I was meant to be in the hospital for 2 weeks, then move to my hotel for recovery. That 2 weeks became 3. But I am past the hardest part. When I leave the Hospital, my dog is waiting for me. All I could do was hug her and cry. We went and got my first meal out of the hospital. I continued staying nearby at a Hotel for a week and a half, returning every couple days for blood work, blood products, and vitals. Mom and I had a rotisserie chicken from the grocery store for Thanksgiving Dinner. I became an expert on the local take out options in Palo Alto (shout out to Chicken G and Hobee’s for the best food in Sunnyvale/Mountain View).
On December 1st, I had 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).
After finally coming home, I was put on Keppra to prevent possible seizures, Bactrim, an antibiotic to prevent pneumonia and secondary infections, and Acyclovir, an antiviral, to prevent shingles. For the first few months, I made a trip back to Palo Alto for labs to monitor levels and track progress for the clinical trial. At the 6 month mark, it was moved to every other month. As of July 2026, I am still waiting for my immune system to fully recover and have to regularly check my Immunoglobulin Level. Think of it as your immune system’s memory. Low levels like mine make it hard to fight off infection. If the level gets below 400 points, I get a 3-4 hour infusion of IGIV, a product derived from blood to help boost IGV. Otherwise, all my levels have returned to their normal averages.
Total time in Palo Alto was Oct. 27 (check in at Hotel) – Dec. 3 (Final PET Scan)
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 have likened the experience to Gregor, from Kafka’s Metamorphosis. I have been turned into a bug (chronic illness), but I must still go to work, or I will starve. I worked through treatment for the first 5 years of my illness, even while I was hospitalized. I finally took time off for treatment and recovery after getting into a clinical trial at Stanford Medical. I took a year off from work on Disability, but now that time is up so it’s time to get back to work and it’s time to take even bigger steps in my career and life. I am looking forward to helping others that may be facing cancer, lymphoma, or CAR-T Therapy.
*****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) In my case it was Aphasia and Temporary Non-Existance.
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. Look and see if your medical provider offers Medical Financial Assistance. Men are the worst at self examination and reporting. If you feel a lump in your Pits, groin, or neck, talk to your Doctor. I deal with life through my Buddhist practice of 17+ years (12 years 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.
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