ROB ACHIEVED REMISSION WITH THE HELP OF BREYANZI
ROB WASN’T GOING DOWN WITHOUT A FIGHT
When his initial chemotherapy treatment didn't work, he and his doctors decided to try Breyanzi.
It all started with a cold
“In May 2022, I turned 46 years old, and I felt perfectly fine.”
For Rob, life was good. He was looking forward to another summer of fun and adventure with his wife Vanessa. They liked to spend their time camping, kayaking, and enjoying the beauty of the Pacific Northwest.
As May turned to June, Rob found himself feeling congested and like he had a head cold. He didn’t think much of it at first, but day by day, his symptoms started to get worse.
Next thing he knew, he’d get exhausted after taking their dog out on their evening walks. But he just chalked it up to seasonal allergies, as he’d never been seriously ill before.
The camping trip that changed everything
The cold symptoms started to feel worse and felt different from any cold he’d had before. But he decided he had to go on their planned camping trip. A few days into the trip, he was feeling worse. His face swelled up and he couldn’t move.
Rob and Vanessa packed up their things, went home, and immediately went to an urgent care. But they said he seemed fine. Over the next few days, he started feeling worse. So they decided they’d go to urgent care again and insist on an x-ray.
That’s when they pulled him aside and told him that there was a mass in his chest and he needed to go to the ER right away.
Fast forward to the 4th of July
After a battery of tests, biopsies, imaging and scans, Rob’s doctors determined that he had large B-cell lymphoma.
Hoping to be one of the lucky ones
His doctors immediately started him on a sequence of chemotherapy. It involved 5 days of 24-hour chemotherapy followed by roughly 2 weeks off. This sequence would repeat 6 times in 3-week increments.
Treatment was encouraging at first. He started to feel better, and it seemed like the lymphoma was responding to the chemotherapy. He began to regain a little bit of strength and feel a little better. After he’d completed the chemotherapy, he did a PET scan and a CT scan.
As Rob noted, ‘‘I was hoping that I would fall into this lucky percentile where I’ve reached remission. But the imaging showed otherwise, and I wasn’t looking at a very good prognosis at that point.’’
A race against lymphoma
They realized they needed to explore second-line treatment. Vanessa describes this time as a race against lymphoma. Rob and Vanessa did their own research and learned about CAR T cell therapy.
They worked with the National Institutes of Health and formalized their candidacy for CAR T cell therapy. It was their understanding that at that time, CAR T was a newer immunotherapy. Their doctor spoke to them about their options, including Breyanzi. It came down to deciding between Breyanzi and another treatment. They ultimately decided on Breyanzi because the idea of an outpatient experience was appealing to them if they were eligible.
Rob got started with the treatment. His doctor explained that side effects with Breyanzi treatment will vary from patient to patient. Breyanzi can cause side effects that may be life-threatening and can lead to death, such as cytokine release syndrome and neurologic toxicities. Because of the risk of these side effects, patients like Rob must remain at, or close to, where they received treatment for at least 4 weeks after the infusion for side effect monitoring.
On the road to recovery
There were some bumps on the road to recovery. He had a fever and needed to be admitted to the hospital. He stayed at the hospital for about 10 days, and during that time, he experienced neurologic toxicity. After 10 days, he went back to the home they rented near the treatment center.
He was feeling a bit weak and like he lost his appetite but he credits his “coach” ( his wife Vanessa) for making sure he took care of himself.
No evidence of disease
After 30 days, Rob experienced a complete response. His doctors were all thrilled. Vanessa recalls that the doctors said there was no evidence of disease.
It’s the little things
During his treatment journey, Rob felt like he couldn’t make any plans. He didn’t even want to buy any clothing because a part of him didn’t know if he would need them. After treatment, he felt hopeful enough that he was able to buy clothes.
When Rob thinks of what helped him along the way, it was the outpouring of love from those around him, but especially from his wife, Vanessa.
Rob’s advice to anyone suffering with LBCL? If the first line doesn’t work, you’ve got a second line, you’ve got a third line.
Taking things one day at a time
Rob used to always think very far down the road. But his experience with LBCL has taught him to focus on today and on what really matters in life. Rob and Vanessa are grateful that CAR T gave them more time together.
Today, they’re grateful, hopeful, and ready to plan their next adventure.