Carmen Phaneuf has participated in several triathlons, hiked in France, and gone skiing in Iceland, but cancer hung over her experiences like a thunder cloud.
According to the National Cancer Institute, Phaneuf of Little Falls has multiple myeloma, a rare form of blood cancer that affects less than 1% of men and women.
When aberrant cells in a person’s bone marrow proliferate and grow out of control, pushing out healthy cells, multiple myeloma develops. The illness, which has no known cure, affects the immune system, causes bone discomfort and crippling fractures, and creates proteins that can harm the kidneys. It can be lethal if neglected.
Phaneuf, who was diagnosed in 2002 at the age of 34 after a routine blood test revealed a low white blood count, said, “It was always on my mind.”
Steroids, chemotherapy, and two stem cell transplants—one with her own cells in 2012 and another with donor cells in 2016—helped Phaneuf control the illness.Phaneuf often experienced two years of remission from the regimen before relapsing and having to start the process anew.
Phaneuf claimed that she was always connected to the hospital, the infusion chamber, and doctor’s appointments.
That is, until November 2022, when she underwent a potentially transformative procedure at Hackensack University Medical Center. This October, Phaneuf, who is currently 57, will commemorate three years in remission.
After having this cancer for 23 years and being confined to a hospital infusion room, I had heard that it would provide me with independence and a quality of life that I hadn’t had in a long time, Phaneuf said.
Phaneuf is one of several hundred patients in New Jersey and thousands nationwide who will receive a one-time infusion of Carvykti, a treatment developed by Somerset-based pharmaceutical company Legend Biotech that tricks the body into attacking the cancerous cells. In 2022, the U.S. Food and Drug Administration approved the treatment.
According to the American Cancer Society, there will be 36,110 new instances of multiple myeloma identified in the US in 2025, and approximately 12,000 fatalities are anticipated.
According to a study by the American Association of Cancer Research, the disease mainly affects Black and Hispanic males between the ages of 65 and 70, as well as people with particular risk factors like obesity, exposure to certain chemicals, and long-term inflammatory or immunological conditions.
According to the state health department of New Jersey, the disease causes approximately 330 fatalities and 730 new cases of multiplemyeloma each year.
According to Ying Huang, CEO of Legend Biotech, multiple myeloma has historically been regarded as an incurable malignancy, meaning that a patient may experience a cycle of various treatments before passing away from the illness.
In reference to a recent study that revealed one-third of patients treated with Carvykti have gone five years or more without requiring further treatment, Huang stated, “But for the first time ever we proved that you can receive one infusion of Carvykti, then you will be in that treatment-free period for five years.”
“Carvykti is a form of chimeric antigen receptor (CAR) T-cell therapy,” Huang, a bio-organic chemistry doctorate holder, explained.
It focuses on controlling T-cells, a subset of lymphocytes that aids the immune system in battling pathogens. T-cells protect healthy individuals against infection. However, Huang noted that cancer had a method of avoiding T-cells.
It’s because the cancer is so intelligent. “Oh, you’re one of our own,” Huang remarked, deceiving our bodies.
The treatment genetically modifies the patient’s T-cells to specifically target and combat the cancer cells.
Huang claimed that the altered cells are able to locate the target, which is cancer, and likened it to attaching a GPS unit to a missile.
According to Huang, the treatment is referred to as a “functional cure” for multiple myeloma, which enables patients to have a protracted period of remission.
According to Huang, a PhD holder in bio-organic chemistry, a patient with this malignancy is usually already in their 60s and has received numerous treatments over the years.
After that, individuals can live for a further five years without developing cancer thanks to our medication. According to him, the likelihood is that they will either have a comparatively normal lifespan or pass away from other causes, such heart disease.
It’s one of the rare situations where passing away following a heart attack is regarded as a positive result.
Carvykti is developed by Legend Biotech in collaboration with Johnson & Johnson. Although the drug costs over $500,000, Huang stated that most insurance companies, as well as Medicare and Medicaid, cover it. There is another FDA-approved CAR T-cell therapy for the treatment of multiple myeloma besides Carvykti.
Only a few locations in New Jersey offer the specialist treatment, including Robert Wood Johnson University Hospital, Rutgers Cancer Institute of New Jersey, and Hackensack University Medical Center.
According to Dr. Noa Biran, co-chief of the Multiple Myeloma Division at John Theurer Cancer Center, which is housed at Hackensack University Medical Center, the one-time treatment offers a significant improvement for patients with multiple myeloma.
Following a two-week hospital stay to monitor for adverse effects such infection, low blood count, and weariness, patients who receive the medication are released from treatment. Biran, who is also an associate professor of medicine at Hackensack University Medical Center, stated that this is a significant advantage for people who are accustomed to being married to the cancer and visiting once a week or twice a week.
According to Biran, CAR T-cell therapy carries potential dangers just like any other treatment.
According to Biran, cytokine release syndrome, which causes fevers, low blood pressure, coughing, and occasionally mental confusion, might strike patients during the first two weeks following treatment.
According to Biran, this is the reason why patients are monitored in a hospital environment for two weeks following infusion.
Long-term adverse effects could also include issues with the nervous system and a diminished capacity to fight infection.
Phaneuf said that the recuperation from Carvykti was simpler than that from stem cell transplants, steroids, and chemotherapy.
I had previously lost my hair. I had anemia. After that, I simply did not feel well. However, eight weeks later, I went skiing, Phaneuf added. It was lot simpler for me, and I would definitely do it again.
To assist her body fight off infection, Phaneuf said she continues to see a doctor every eight weeks to obtain immunoglobulin replacement therapy. In order to assist avoid bone loss, which is a common occurrence for people with multiple myeloma, she also takes Zometa.
Although she may not be cured, she feels liberated. Multiple myeloma still has no real cure.
Since I most likely won’t be able to have another transplant straight away, I’ll be sad if I relapse. For a period, they will most likely desire to undergo chemotherapy. Phaneuf stated that this freedom would be taken away.
She does, however, hope that a different treatment will be available for her to try when she relapses.
Phaneuf stated, “I’ll take what I can get, and I’m looking for freedom and a quality of life.”
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