By: Frank Lalli
From: parade.com
Carl H. June, M.D., who spends his days in a sterile research laboratory, had never met the woman who crossed the room and hugged him at a conference in New York City last fall. But she had a good reason. Just one year earlier June had saved her from a blood cancer that might have killed her within weeks.
Lori Alf, now 50, was the first volunteer for a clinical trial using immunotherapy—which boosts the body’s natural defenses—to fight a blood cancer called multiple myeloma. The highly experimental trial was run by June at the University of Pennsylvania. To him, Alf had been only a code ending in 01, for the first anonymous patient. But with her hug, Alf personified the millions of cancer patients June and his colleagues hope to save by transforming a patient’s own immune system into a cancer killer.
During his presentation later that day at the Multiple Myeloma Research Foundation’s Leadership Circle Summit, June choked up as he showed Alf’s before and after slides. In the former, round liquid myeloma tumors clog 95 percent of her bone marrow, crowding out all but a whisper of healthy cells—barely enough to survive. The second slide is completely clear. Alf’s cancerous blood tumors had vanished within a month or two after her treatment.
How? Researchers withdrew some of her immune system’s white blood cells, transformed them in the lab into hunters retrained to track down and kill her cancer cells, then let them loose in her body.
And it worked: Alf is cancer-free. That’s nothing short of a medical miracle.
Findings by June and his researchers—as well as new studies—suggest that immunotherapy could fight more than two dozen types of cancer. Before too long, for example, blood cancer patients could walk into outpatient clinics and get one-time, 10-minute intravenous drips of their own commercially reprogrammed immune cells and become cancer-free within weeks.
As for Alf: “I was supposed to die. But here I am,” she says. “I feel as if I was placed into one of the lifeboats from the Titanic—and I can’t help looking back and wishing that everyone on that ship could join me.”
5 Questions to Ask Before Joining a Clinical Trial
A Mean Cancer
Before Alf got very lucky in the clinical trial, she was profoundly unlucky. Back in 2009, the smart, speed-talking mother of three, who runs an Olympic-class ice rink in West Palm Beach, Fla., thought she had a worsening case of bronchitis. Her family doctor delivered the bad news: Alf had multiple myeloma, a treatable but incurable blood cancer that affects fewer than 90,000 Americans—and rarely someone so young. She was 43.
“I walked out to my car,” she says, “slumped down onto the hood and stayed there paralyzed, crying.”
But within a week, she and her husband, Chris, took control of what became a seven-year ordeal to keep her particularly aggressive cancer in check. While many myeloma patients find therapies that allow them to enjoy the semblance of normal health for years, Alf lurched from one disappointing treatment to another, including a debilitating stem cell transplant using her own blood. Few therapies helped her for more than months at a time. “I had a really mean cancer,” she says.
Her lead myeloma specialist, the renowned Kenneth C. Anderson, M.D., of Boston’s Dana-Farber Cancer Institute, agrees: “Lori had one of the worst myelomas I have ever seen.”
By 2014, Alf was down to 80 pounds, with a grim prognosis.
In desperation, she and her doctors were considering her second stem cell transplant, this time with cells from her sister, who is not a perfect genetic match. The doctors told her that the complications triggered if the transplanted cells attacked her body rather than helped her, known as graft-versus-host disease, could end her life.
One Last Chance
There was one other option. Scouring the internet, Alf and her husband discovered something so new even her own doctors hadn’t heard about it. University of Pennsylvania researchers were organizing clinical trials to reprogram the immune systems of seriously ill myeloma patients like her. Instead of using chemotherapy drugs to attack the cancer, immunotherapy assaults cancer cells from within with a patient’s own re-engineered immune system.
Alf had long believed immunotherapy—which avoids graft-versus-host complications by using the patient’s own cells—held the key to curing her cancer. She was determined to get into the trial funded by drug manufacturer Novartis. She told her then-16-year-old daughter Caterina, a competitive figure skater, “If they reject me, you go into that doctor’s office and cry your eyes out. Make a scene until they change their minds.”
But Alf was exactly the type of patient the researchers wanted—seriously ill with the abnormality they were targeting, yet hopefully strong enough to survive the rigors of the trial itself.
The stakes were high: The immunotherapy hadn’t even been tested on animals. University researchers were moving fast to treat the seriously ill myeloma volunteers under expedited “breakthrough” status from the U.S. Food and Drug Administration and did not stop to experiment, even on mice.
Alf was “the mouse model.”
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In a process similar to kidney dialysis, she was hooked up to a machine that collected a type of white blood cells called T cells. “Then the lab made my T cells very angry,” she explains. Actually, the lab transformed the T cells with a protein called chimeric antigen receptor (CAR) into what they hoped would be an army of hunters that would recognize her enemy myeloma cells and kill them.
Twelve days later, the doctors dripped the red, garlicky-smelling CAR T cells into her veins. The next day, she felt sicker than ever. But that was about what the doctors had hoped: In their earlier trials with leukemia patients, when the immune system’s army overwhelmed the enemy, the warfare commonly triggered high fevers, nausea, muscle pain and sometimes serious neurological symptoms.
Fortunately, Alf was spared the worst of that and was well enough to be discharged a week later to a nearby hotel. Still, she continued to feel “jittery, itchy, twitchy and miserably nauseous.”
But her blood tumors decreased—then disappeared. “I’m sure we killed my mother cancer cells,” she says of the stem cells where cancer originates. More than one of her oncologists agree. Nothing else explains her remarkable recovery.
“I cry from happiness every time I see her,” says Alf’s Florida oncologist Robert J. Green, M.D. “When she went to Pennsylvania, I didn’t think I’d see her alive again. Lori is proof that these new immunotherapies do magical things.”
Cancer-Free
Nearly two years later, Alf’s blood is totally normal, and she’s finding joy in the smallest moments of life, “like the smell of my dog, Versace,” she says.
Husband Chris marvels at the resilience of the woman he fell in love with 27 years ago. And their three teenagers cherish a bedtime ritual they started in childhood, Caterina says: “We all go in and kiss her goodnight.”
Whenever possible, Alf shares her story at conferences and events in hopes of raising more research money for the treatment that saved her life.
The mighty mouse roars on.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.