If you missed the Parade magazine article on Sunday, this was a great article about Lori Alf and her success with this Therapy. This therapy is saving many lives for those not having to go thru Chemotherapy. Immunotherapy involves the use of a person’s own immune system to treat an infection or disease.
There are links in the article that direct you to Where you can Find Potential Trials and 5 questions to ask before joining a trial. What is most important to know is that most physicians do not know about the immunotherapy treatment or trials so you must tell them about it and even if they do know about it may not tell you - ask them how you can be a part of those trials. As Lori states in the article had she not researched her cancer and what is available as treatment, she would not have known either. But she did and that knowledge saved her life.”
Seven years ago I did not have this option so this is very promising for many.
I hope this will help anyone out there who is going thru their cancer journey.
MAY 6, 2016 – 5:00 AM By FRANK LALLI
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.
Click on the Read More to the right for the rest of the story
Tom Brokaw talks about multiple myeloma and this week’s Parade cover story:
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 CLICK HERE
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.”
Where Can You Find Potential Clinical Trials? CLICK HERE
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.”
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.
Below are Lori Alf's 3 Rules of Life.....
MAY 6, 2016 – 5:00 AM By FRANK LALLI
Throughout her seven-year battle with cancer, Lori Alf embraced these three rules for life.
1) Learn who you are at your core. “I was the mother of three young children. That’s what made me tick. There was no way I was going to let anything separate me from my kids without a fight.”
2) Become your best medical advocate. “I learned everything I could about my cancer, multiple myeloma, and then about my own case. That allowed me to have in-depth conversations with my doctors that led to the most informed decisions about my treatments. Some myeloma experts didn’t yet know about the immunology trials. But I did. And that knowledge saved my life.”
3) You need grit to get through it. “A fight against cancer takes an enormous toll on you, physically, emotionally, financially and spiritually. You need grit to make it through the worst of it. I woke up one morning and I didn’t have the use of my right leg. But I kept going.”