Saved by an experimental treatment, Boca Raton
woman works for a cure for multiple myeloma
Lori Alf was the first volunteer for a clinical trial using immunotherapy
to fight a blood cancer called multiple myeloma.
Tim Stepien/The Coastal Star
By Lona O’Connor
She is a striking woman who turns heads when she walks into a Boca Raton Starbucks. But there is something else that makes Lori Alf stand out, and it cannot be seen.
“Lori is a force of nature,” said Dr. Carl June. Like others who know her, June is referring to her energy and tenacity. But it may also turn out that she is a force for the cure of multiple myeloma, one of the most devastating cancers.
Alf, 50, of coastal Boca Raton, was the first person to volunteer for a medical trial at the University of Pennsylvania in 2014, using a new technique developed by June’s research team. Within weeks, she was free of cancerous myeloma cells, which were crowding out her healthy blood cells and well on their way to killing her.
Scientists are now studying her tissue samples, because finding the reason for her remarkable recovery may lead to a cure for others.
Alf was 43 in 2009 when she got her diagnosis. She had three young children, a husband and a busy life. She was running Palm Beach Ice Works in West Palm Beach, a facility for competitive and recreational skaters. Her daughter, Caterina, 18, is a competitive skater and her son Christer, 16, is a hockey player.
Multiple myeloma starts in the bone marrow, where lethal “mother cells” send “daughter cells” into the blood. As the disease progresses, healthy blood cells dwindle almost to nothing.
About 30,000 Americans will be diagnosed with multiple myeloma this year, and 48 percent will survive, according to estimates by the National Cancer Institute.
Lori Alf’s son Christer and dog Versace sleep with her while Alf was still receiving
chemotherapy, before she began the immunotherapy clinical trial at the University of Pennsylvania.
Photos provided
Alf did not even remotely fit the profile for multiple myeloma. Those most likely to have the disease are over 65, male, often African-American. What could have caused it?
“The doctor asked me right away if I had been exposed to radiation,” said Alf.
She grew up in rural New York on her father’s vineyard, ice skating on the nearby pond in winter. The family farm was near Niagara Falls, N.Y., and two toxic dumps: The first was the infamous Love Canal, site of a chemical dump that caused a number of cancers in nearby residents in the 1980s and is still leaching carcinogenic substances into the earth.
Also nearby was the Lake Ontario Ordnance Works, near Lewisburg, N.Y. At least 10,000 tons of radioactive material from the Manhattan Project had been stored there since 1944, when scientists were building the first atomic bomb. Some of the waste was stored in a concrete silo, but some of it was left on open ground near waterways that lead to Lake Ontario.
Those working on the Lake Ontario radiation cleanup say it will be completed in 2025. Others estimate that the radiation could linger for another 10,000 years.
Lori Alf feels that the radiation dump was the source of her cancer.
By far the most familiar treatment of many cancers, including myeloma, is to poison them with strong drugs — chemotherapy. Alf received her treatments at the prestigious Dana-Farber Cancer Institute in Boston, but years of chemotherapy and blood transfusions barely kept her alive.
Alf’s family rallied round, according to their abilities, even her youngest child.
“I don’t remember too much about it,” says her son Chapin. “I was only 6.”
But his mother remembers. Chapin, like his brother and sister, took on the role of constant companion. “He’s still very protective of me,” says Alf, as Chapin sits next to her in a Boca Raton coffee shop.
Her husband, Chris Alf, who runs an air transport company, was her partner on medical decisions. After five years of chemotherapy, Alf was only just hanging on, living from one blood transfusion to the next. Her body was no longer responding to treatments.
All along, the Alfs wanted to try immunotherapy, the use of the body’s own protective forces to kill the cancer. They were told that such treatment did not yet exist.
Alf sits with Dr. Edward Stadtmauer (left) and Dr. Alfred Garfall while undergoing immunotherapy.
They had been researching the Internet for alternative treatments when they discovered a medical trial at the University of Pennsylvania. The technique was so new that it had not even been tried on lab rats.
Alf was the first to sign up for the trial, which took only 10 people who had exhausted all other medical alternatives. She weighed 80 pounds and had only weeks to live.
T cells were collected from her blood, then genetically altered into super-versions of themselves. Researchers grew billions of the altered T cells and returned them to her body, where they multiplied and killed the cancer cells. The T cells now contained chimeric antigen receptors, which could find and destroy her cancerous cells.
Researchers are continuing to study a batch of tissue samples they took from her. If something found in those samples provides the key to curing multiple myeloma, she will be pleased.
But until that day comes, she is as busy as ever. A member of Vice President Joe Biden’s “Moonshot” team to find a cure for cancer, she has set fundraising as her goal. Biden launched the effort in January at the Abramson Cancer Center at the University of Pennsylvania, where Alf received her treatment. She also volunteers for Stand Up to Cancer.
“Independent funding is so important because we need to get answers so we can help all the other people,” she says.
When she chats with myeloma patients, some just as desperate as she once was, she says, “They seem to calm down. I think it’s just the fact that I made it.”
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