Alexander Gonzalez Franco: Sharing Experience with Lymphoma and CAR T-Cell Therapy to Help Others Make Informed Decisions
In October 2021, Alex Gonzalez went to an urgent care facility, seeking relief for severe abdominal pain. The medication that he was prescribed didn’t alleviate the discomfort and he decided to follow up with his primary care physician.
Alex received a call from her the day after his visit.
“She asked, ‘How far are you from the emergency room?’ I asked her why and she responded, ‘Because you have a life-threatening situation. I need you to go to the emergency room right now’,” Alex said.
Alex was at work at the time, even though he was still in pain. But after speaking with his doctor, he went home, talked with his wife, and headed to the hospital.
At the hospital emergency room, the doctors ran a series of tests. At this point, Alex had no idea what was going on.
“I thought it was something related to my gastrointestinal pain. Maybe I was eating too much, or I was sitting oddly for long hours,” Alex said.
After Alex waited for about three hours in the ER, a doctor told him that he suspected Alex had lymphoma. “I didn’t know what lymphoma was, exactly. I knew it was a type of cancer,” Alex said. A million questions ran through his head.
Alex met with an oncologist the following morning. She informed him that, based on his scans, it was most likely that Alex had lymphoma, but that he needed a biopsy to confirm the diagnosis. Alex decided to get a second opinion, and after another series of tests and a biopsy, he was diagnosed with transformed large B-cell lymphoma, the most common form of non-Hodgkin lymphoma.
Alex was initially treated with chemotherapy in November 2021. He continued with this treatment up until March 2022.
That’s when his cancer stopped responding. Alex and his wife, Raquel Castellanos, began researching other therapeutic options, including a form of immunotherapy known as CAR T-cell therapy. On April 1, 2022, the FDA approved axicabtagene ciloleucel (Yescarta) as a second-line therapy for Alex’s form of lymphoma.
This seemed like a promising option, but as Alex and Raquel debated whether to try the treatment, they discovered that there was no information on how Hispanic patients like Alex had fared with the treatment. Being a cancer researcher herself, Raquel understood data from one specific racial or ethnic group can’t always be extrapolated to other populations.
“When you have cancer, decisions are very important. You don’t have a month or six months to decide. You need information to make the right decisions, and if that information is available because someone else underwent that experience, that’s going to help a lot of people,” said Alex.
Despite their concerns, Alex decided to proceed with the CAR T-cell therapy, believing that it was the best available option. Alex received the infusion of CAR T cells in May 2022.
“We read a lot about the side effects. So, we knew in advance about the chills, the nausea, and the fevers,” Alex recalled. “The same day I received the CAR T cells, I was vomiting. I was with some pain and the next day I was with a high fever going up to 105 degrees for three days,” Alex said.
Alex’s memory of the days that ensued is hazy at best.
“That part of my memory was erased. It is very hard to explain; it’s hard for you to be in a situation when you don’t know what is happening with you,” he said. “They were asking me questions every day, about my name, what I was doing in that hospital. And sometimes you don’t remember.”
Alex’s health has improved steadily.
“I have my strength coming back little by little. Based on the reports, my immune system is getting better. I think that I am feeling better every day,” Alex said.
His health care providers are monitoring his recovery remotely, a practice that is increasingly becoming part of routine cancer care. A nurse comes to his home once a week to check on his vitals, while Alex must do that by himself every day. All his health information is collected through a mobile device and is sent to his health care team each day.
“The follow-ups are day by day. If something concerning happens, the doctors can see it and they call me right away, just to double chec or to ask me questions about how I’m feeling,” Alex said.
Alex hopes that by sharing his story, he can raise awareness among his friends and family of the importance of regular health checkups.
“It’s better to do health checkups on time. Because sometimes we forget, and we put ourselves last,” Alex said.
He also hopes that by sharing his experiences with cancer and the lessons he has learned along the way, he can help other patients. He also hopes that other Hispanic patients can look to his story to make timely and informed decisions about their cancer care.