Meet Laurie Adami (6 years cancer-free)
On August 15, 2018, Laurie Adami’s oncologist, Dr. Sven de Vos (University of California, Los Angeles) walked into the room with Laurie’s scan results.
When he told her the news – that her cancer was gone – Laurie crumpled up the paper with the results and threw it across the room.
“I called it nonsense,” she says. “I didn’t believe it.”
That was in 2018, and despite Laurie’s initial disbelief, she remains in remission from follicular lymphoma. Having been told when first diagnosed that this type of lymphoma was “incurable”, Laurie’s oncologist told her the opposite when she reached five years cancer-free.
And it’s all thanks to CAR T-cell therapy, a type of cell and gene therapy that genetically engineers a patient’s own immune cells to more effectively find and attack cancer.
“At my 5-year CAR T-cell anniversary, Dr. de Vos said, ‘Laurie, you are cured,’” Laurie remembers. “I responded that follicular lymphoma has never been considered curable. He told me, ‘Not one of my follicular patients who received CAR T-cell therapy and was still in complete remission at the one-year scan has relapsed.’”
Laurie’s doctor added, “CAR T-cell therapy can be a cure for follicular lymphoma.”
Laurie Adami’s diagnosis and early treatment.
Laurie was diagnosed with follicular lymphoma, a type of non-Hodgkin lymphoma, in 2006. Her hope was the first round of treatment would work and allow her a return to her pre-cancer life. She received six cycles of a monoclonal antibody treatment combined with chemotherapy, which was FDA-approved to treat follicular lymphoma.
After the six cycles, Laurie had clean scans and thought she was in complete remission. She returned to work, but her first scan four months later showed the cancer had returned.
“I’m still living with the chemotherapy side effects today,” she says.
When Laurie relapsed the first time, the only FDA-approved option for second-line therapy was an autologous stem cell transplant, which she researched and learned was not very successful for her type of blood cancer. This led to a 12-year cycle from 2006-2018 of trying new therapies, enrolling in clinical trials, and hitting roadblocks.
“I’d find a new therapy and at the beginning I would read as much as I could about it and find patients who were doing well after receiving the treatment. I was grasping at straws, and it was so discouraging every time I’d get my hopes up and subsequently relapse. ” — Laurie Adami, CAR T-cell therapy patient
Laurie tried six lines of therapy, and none put her in complete remission. Only one of them – a small molecule pi3 kinase inhibitor pill – kept her cancer from growing for a considerable amount of time: more than five years.
“While it didn’t put me in remission, I had a stable disease” she says. “It bought me a ton of time for other treatment advancements to come.”
How Emily Whitehead’s story inspired Laurie.
Laurie’s CAR T-cell therapy journey began many years before she ever received the treatment. In 2012, she attended an event hosted by the Leukemia and Lymphoma Society and saw a video featuring Emily Whitehead, the first child ever to receive CAR T-cell therapy.
Emily, who had acute lymphoblastic leukemia, enrolled in a clinical trial at Children’s Hospital of Philadelphia and received her CAR T cells earlier that year in 2012. She has been cancer-free ever since.
The CAR T-cell therapy that Emily received was developed by Carl June, MD (University of Pennsylvania) and funded by Alliance for Cancer Gene Therapy (ACGT). Dr. June, a pioneer of CAR T-cell therapy, received a research grant from ACGT to develop this groundbreaking science.
“I knew nothing about CAR T-cell therapy at the time, but as I watched Dr. June on this screen talking about CAR T-cell therapy, I felt as if my hair was standing on end. There was a cancer therapy that would be manufactured just for me? It just felt different than everything else that came off the factory line as one-size-fits-all therapies.” — Laurie Adami, CAR T-cell therapy patient
That same week, Laurie met with Dr. de Vos at UCLA and asked whether she could receive CAR T-cell therapy for her follicular lymphoma. Dr. de Vos told her that Kite Pharma, a biotechnology company, was developing a CAR T-cell therapy for her type of cancer.
All she had to do was hang on until the therapy was available in a clinical trial – and she did.
“It was 2018,” Laurie says. “I was on a walk when my phone rang. It was Dr. de Vos at UCLA calling to tell me the trial was opening up and that I needed to come in to fill out the paperwork.”
The clinical trial was to test a CAR T-cell therapy called Yescarta – manufactured by Kite Pharma – for follicular lymphoma. Laurie was to be the first of five patients enrolled at UCLA.
Laurie’s experience with CAR T-cell therapy.
Laurie received her CAR T cells on July 16, 2018. She experienced the two most common side effects – cytokine release syndrome and neurotoxicity – but made it through the storm, and now she was waiting to learn if the therapy had worked.
That’s when Dr. de Vos came in with the clean scan results, and every scan since then has been the same.
“I would get what I called ‘scanxiety’ before every scan,” Laurie says, “especially considering how many relapses I had over the previous dozen years. But my oncologist said very early on that if I made it to one year disease-free, he believed I would have a durable remission.
“He was right.”
Reflecting on the curative potential of CAR T-cell therapy.
When Laurie was diagnosed in 2006, her son was in kindergarten. When she enrolled in the CAR T-cell clinical trial in 2018, her son had just graduated high school. He spent his entire childhood watching his mom try different treatments – to no avail – so it’s understandable that he was unsure about CAR T-cell therapy.
However, Laurie had a gut feeling that this time would be different.
“My son was completely discouraged,” Laurie remembers. “He said, ‘Mom, you’ve gone through six treatments and every time it didn’t work. Why do you think this will be any different?’”
He was sitting in his bedroom distraught and told his mom he was afraid she would die.
“I said, ‘Because, this is different. This will use my own cells. It’s not a one-size-fits-all therapy,’” Laurie says.
Cell and gene therapy is different. There are now six FDA-approved CAR T-cell therapies for certain types of leukemia, lymphoma and multiple myeloma and four other types of cell and gene therapy approved for certain solid tumors.
Yescarta, the CAR T-cell therapy Laurie received, is FDA-approved for people with follicular lymphoma who have tried at least two other kinds of treatment. The approval is largely thanks to Laurie’s clinical trial, which had a 95% overall response rate and above an 80% complete remission rate.
There are also many stories of cell and gene therapy succeeding for people with leukemia, lymphoma and multiple myeloma after standard treatment such as chemotherapy failed. As a volunteer patient advocate for the Leukemia and Lymphoma Society, the Cancer Research Institute, and the Lymphoma Research Foundation, Laurie relates her story to people considering CAR T-cell therapy and provides support to them on their journey.
“Cell and gene therapy is the wave of the future,” Laurie says. “Dollars directly translate into improving patient outcomes. These therapies don’t work yet for everyone, so I always talk about the importance of funding further research.
“The most important act a person can take is to fund nonprofits like Alliance for Cancer Gene Therapy to improve upon the work that has been done to date.”
