Wearing a pink dress, Lori Alf clacks around her home in Louis Vuitton kitten heels like any number of fashionable, affluent Boca Raton women.
It’s only her fierce blue eyes, coolly sizing up a visitor for any hint of sentimental nonsense like calling her “plucky,” that hint at her ordeal as a cancer warrior.
Her doctors say she’s a force of nature.
“Fierce is the perfect description of Lori,” said one.
“I have grit,” she admits.
And how.
Alf, 50, is a living, breathing (emphasis on both of those) Lazarus, snatched from the grave thanks to a revolutionary immunotherapy cancer treatment for multiple myeloma.
She weighed 80 pounds and was weeks from death when she became the first person in the world to undergo a procedure so new it hadn’t been tested, even on mice.
She volunteered, knowing it was her last chance to watch her three children grow up. Her last chance, period.
That she lived means other patients may eventually, too.
“We converted someone who wasn’t expected to be with us much longer, to someone who is perfectly normal, living her life,” said Edward Stadtmauer, one of the doctors who directed her clinical trial at the University of Pennsylvania. “It opened the entire field of cellular therapy for myeloma … but really, it ultimately comes down to her. She was the pioneer. Her success motivates us all.”
After Parade magazine, a Sunday supplement carried by The Palm Beach Post, ran a story about her recovery, she agreed to an interview.
“I don’t need the attention,” she said, “but I want to spread the word about this major advancement. Now, we need money for more clinical trials; that’s my mission.”
In 2008, Alf was 42 when a persistent cough with pain in her ribs and back sent her to the doctor.
“How quickly one doctor’s appointment can change your life,” she says.
The eventual diagnosis was advanced-stage multiple myeloma, a form of bone marrow cancer.
She believes it came from attending school near a suspected radioactive dump site in her hometown of Lewiston, N.Y.
At the time, Alf’s three kids were in elementary and middle school at American Heritage School. She was building Palm Beach Ice Works, an Olympic-style ice rink in West Palm Beach so her daughter, Caterina, a competitive figure skater, would have a place to practice.
Together, she and her husband, Chris, own National Air Cargo, a defence contractor that delivers military equipment and medical supplies to countries around the world for the US Air Force.
She tried to hold her life together during six years of agonising medical treatments — long hospital stays, rounds of debilitating chemotherapy, blood transfusions and a difficult stem-cell transplant.
Shortly after her diagnosis, Alf asked her oncologists about the possibility of using immunotherapy, which enlists the body’s own immune system to root out and destroy cancer cells.
She was told it wasn’t possible in her lifetime.
By 2014, time was running out. She’d become “refractory” or immune to every therapy her doctors tried.
Other patients might have prepared for death.
Alf kept scouring medical websites for options.
And found one not even her doctors knew about.
A new clinical trial at the Perelman School of Medicine at the University of Pennsylvania was investigating chimeric antigen receptor (CAR) T-cell therapy for patients with advanced myeloma, a procedure pioneered by UPenn researcher Carl June.
Instead of relying on chemotherapy drugs to hold the line against cancer, the idea was to re-program a patient’s immune system to wipe it out.
She told Caterina, then 16, that if the team rejected her for the clinical trial, she should go into the office and make a scene.
“Cry, scream, do whatever you can to get them to change their minds,” she remembered telling her daughter.
But Alf was who the researchers had been waiting for — a critically ill patient who was still strong enough to endure the trial.
Here’s how it works: Essentially, a patient’s own normal T-cells, a kind of white blood cell that fights disease, are withdrawn then genetically engineered in a lab to become cancer killers. After being transfused back into the patient, they go to war with the malignant cells.
“It means putting an artificial warhead on a person’s T-cells,” said Stadtmauer, who ran the clinical trial with Alfred Garfall. “Inside the patient, the cells grow … in relation to the amount of cancer.
“It has revolutionised the whole thought process of how to treat cancer,” he continued. “Cancer is very smart; it keeps mutating to evade our therapies. If you can directly attack it and destroy it, it doesn’t have a chance to evolve further.”
Twelve days after collecting Alf’s T-cells, her doctors returned them to her as an angry army bent on destruction.
Alf got sicker, which was good. It meant her immune system was revving its engines.
Her blood tumours began diminishing, then within a few months, couldn’t be measured.
Two years later, her blood work is completely normal, although she goes to UPenn in Philadelphia twice a month for a low-dose immunotherapy booster.
“Up until her treatment, this (procedure) was just a hypothesis,” said Stadtmauer, who hopes to see at least preliminary FDA approval for the procedure in about a year.
“I’m in the deepest remission possible,” said Alf, “but I don’t want to give people false hope. This isn’t a cure. Not yet.”
Researchers need millions to conduct clinical trials and set up new and larger labs.
“It can be done and there are brilliant people willing to do it,” she says.
Today, Alf looks fit and healthy. She runs on the beach nearby almost daily while trying to maintain as much inner peace as possible while raising three kids. Caterina, her oldest, just graduated from high school.
She’s concentrating on raising money for UPenn’s research, while hoping to attract major philanthropic donors to pay for more clinical trials there and elsewhere.
“What’s going to define me is working toward this. It’s not about anything else for me,” said Alf. “We still have so much to do.” —The Palm Beach Post/TNS