Published on August 13, 2020
Caitlin's journey: Lymphoma patient gets fresh start with CAR T
In August 2016, Caitlin Buchanan, a native of Anaheim Hills, California, wondered why a stubborn cough wasn't going away. Each month, another doctor offered a different diagnosis: a cold, an allergy, asthma, pneumonia. They treated her, but she didn't get better.
The doctor who finally got it right wasn't even looking for it.
Caitlin and her husband Brian were trying to conceive a child through in-vitro fertilization. The IVF physician spotted something wrong and sent the Buchanans to a pulmonologist.
A few tests later, the answer came: primary mediastinal diffuse large B cell lymphoma (PMBCL), a rare, fast-growing blood cancer that strikes mainly young adults. In PMBCL, lymphoma cells build up between the lungs and behind the breast bone. One of Caitlin's lungs had partially collapsed.
“We were shocked,” recalled Caitlin, “but after so many months, it was almost a relief, once we knew.”
Caitlin overcame her shock and fear by shifting into survival mode, doing whatever necessary to get through each day.
Typical Caitlin, according to Brian.
“She's unyieldingly strong,” he said.
Six rounds of chemotherapy shrank the cancerous mass somewhat, but it grew back. More chemo failed to achieve a remission, leaving Caitlin ineligible for a lifesaving stem cell transplant.
“That was tougher to hear than the original diagnosis,” she remembers. “I thought it was the end of the world.”
But just when the Buchanans thought they'd run out of options, fate, science, the calendar and the Food and Drug Administration aligned perfectly. In December 2017, Caitlin was given axicabtagene ciloleucel, or “axi-cel” (commercially known as Yescarta), a CAR T cell treatment approved by the FDA just a few weeks earlier.
CAR T cells are immune cells taken from a patient, re-engineered to seek out and destroy cancer, then re-introduced into the patient. City of Hope has been studying CAR T cells since the late 1990s, and played a significant role in the approval of Yescarta, one of two CAR T cell therapies now FDA-approved for treating various blood cancers.
CAR T cells are a major breakthrough,” said Alex Herrera, M.D., the City of Hope oncologist who treated Caitlin. “They're very effective for patients who are resistant to chemotherapy, and they're giving new hope to people who previously had no hope."
Before FDA approval of Yescarta in October 2017, this form of treatment was available only to a limited number of patients taking part in clinical trials, and it would take four to six weeks to alter the immune cells and mass produce enough of them for the patient.
With Yescarta, that time has been cut to 2½ weeks.
A Dramatic Recovery
The first patient to receive Yescarta at City of Hope was a woman who achieved complete remission in 28 days. When she'd first arrived, “she was in very bad condition,” said Elizabeth Budde, M.D., Ph.D., assistant professor in the Department of Hematology & Hematopoietic Cell Transplantation . “By the end of the therapy, other patients in the waiting room were commenting that they no longer recognized her. It was that dramatic.”
So dramatic in fact, that many see CAR T cells as a “miracle” which may someday supplant chemo as the preferred treatment.
But that day, warns Herrera, is still a long way off.
To begin with, axi-cel, like other CAR T cell treatments, doesn't work for everyone. Although the great majority of patients will initially have a significant response, the success rate hovers at 30% to 40% of patients who are still in remission after 6 to 12 months, and its long-term effectiveness is not yet known.
“Thirty to 40% still isn't good enough, in my opinion,” said Herrera. “My job is to improve on that and optimize the treatment.”
Like other immunotherapies, axi-cel can also bring on a condition known as cytokine release syndrome (CRS). CRS symptoms include fever, nausea, headache, rash, rapid heartbeat, low blood pressure and trouble breathing. Most patients have a mild reaction, but sometimes it may be severe or even life-threatening.
CAR T cell treatment is considered a last resort, given to patients for whom chemo has failed.
For Caitlin, the journey to the “last resort” could not have turned out better, starting with a doctor she calls a “perfect match.”
She chose Herrera the same way many patients do, after watching his video on the City of Hope website. “I remember just crying and thinking, 'This is who I want.' I called right away.”
Herrera was equally impressive in person, answering all questions and taking the time to explain everything. “He's so personable, always available and his relationship to his patients is so important to him,” she said.
The feelings were mutual.
“She's a wonderful person, and so is Brian,” said Herrera. “Seeing them when they come in is like visiting with friends. We have similar senses of humor, we connect on many levels and we really enjoy our time together.”
Even so, walking into City of Hope on that first day was tough.
All remaining fears and doubts disappeared once the couple met the staff. “We couldn't be in a better place,” Brian said.
“When you get bad news,” she said, “you tend to go to your worst possible place. But stepping through those doors at City of Hope, as difficult and intimidating as it was at first, you see how hard everybody works, how much they care, how hopeful they are, and you just can't help but feel hopeful, too.”
Caitlin's results with Yescarta were equally phenomenal: She spent 16 days in the hospital, and though she did spike a fever — an expected result of the treatment — she generally avoided CRS symptoms and other problems.
Best of all, the CAR T cells did their job. Caitlin's 30-day scan showed a complete remission, as did a subsequent scan at three months.
People noticed her rapid improvement.
“She looks normal, not sick!” says Chona Gomez, R.N., the nurse coordinator who handled Caitlin's case. “I can't get over how beautiful she looks now.”
Caitlin still can't get over her total turnaround, but she's embracing it: she's back at work, walking with a bounce in her step, and looking forward to a bright future — with a difference.
“I looked for a reason for all this madness I've been through,” she said. “I've now found my voice, and what I truly want to do. I'm going to nursing school. And I plan to be a CAR T cell mentor to other patients.”
One last thing. Remember the IVF doctor? So, what about another try at starting a family?
“It's back on the table.”
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