The news that Patti Scialfa, Bruce Springsteen’s wife and bandmate, has multiple myeloma is bringing attention to the rare blood cancer.
In the new documentary “Road Diary: Bruce Springsteen and the E Street Band,” Scialfa says that she was diagnosed in 2018, according to Variety, which was first to report the news. She has struggled to perform because of the illness, she says.
“This affects my immune system, so I have to be careful what I choose to do and where I choose to go,” Scialfa, 71, says in the documentary, according to Variety. “Every once in a while, I come to a show or two and I can sing a few songs on stage, and that’s been a treat.”
The film premiered Sunday at the Toronto Film Festival. Scialfa has been mostly absent from the E Street Band’s current tour.
A representative for Springsteen declined to comment or provide further information.
Multiple myeloma affects plasma cells, a type of white blood cell produced in the bone marrow. As a result, the cancer primarily affects the bones and kidneys. The disease and the treatments for it — such as stem cell transplants and immunotherapies — often make patients more vulnerable to recurring infections such as respiratory illnesses.
There’s no cure for multiple myeloma, so many patients must receive treatment forever.
“Myeloma treatment is a marathon,” said Dr. Manni Mohyuddin, a multiple myeloma specialist at the University of Utah’s Huntsman Cancer Institute. “This isn’t cancer that you can surgically remove and cure. This is a cancer that requires long term, ongoing treatment and lifelong monitoring.”
Around 35,000 multiple myeloma cases are reported each year in the U.S. Older adults, men and people with obesity have a higher risk of the disease, though doctors are still trying to understand the reasons for that.
The cancer for the most part is not hereditary, but people whose sibling or parent had myeloma may have an elevated risk. That genetic risk appears to be more pronounced among Black people than white people, said Dr. Joseph Mikhael, chief medical officer of the International Myeloma Foundation.
Multiple myeloma is twice as common among Black people than white people in the U.S., and mortality rates among Black Americans are twice as high. Black people are also more likely to receive delayed diagnoses or have reduced access to treatment, which likely contributes to the disparity, Mikhael said.
Most people with multiple myeloma are diagnosed in their 60s, 70s or 80s.
“Myeloma is predominantly a disease of aging, so the older you get, the more likely you are to get it,” Mohyuddin said.
Doctors don’t know what causes the disease, but Mohyuddin said many cases are probably linked to random genetic changes that people aren’t born with, which are more likely to happen as they age.
For a small minority of patients, heavy exposure to radiation, Agent Orange or certain pesticides may also raise the risk of multiple myeloma. Firefighters have a higher chance of developing the disease than the general population, likely due to their exposure to carcinogens in smoke.
A common first symptom is bone pain, such as a dull ache in the back, ribs or hips. Some patients might also have fatigue, weakness or numbness in their arms and legs. These symptoms aren’t specific to multiple myeloma, however, so the disease often isn’t diagnosed right away.
“The average myeloma patient, independent of race or ethnicity, sees their primary care provider three times with signs and symptoms that are consistent with myeloma before the diagnosis is suspected,” Mikhael said.
High calcium levels, anemia or kidney problems are also tip-offs, as are bone fractures, said Dr. Mansi Shah, a hematologist and oncologist at Rutgers Cancer Institute and RWJBarnabas Health in New Jersey.
“Essentially, the bone restoration process doesn’t happen when someone has multiple myeloma,” Shah said. “People might develop a fracture in their ribs by sneezing because their bones have become so weak.”
To diagnose the illness, doctors usually order a blood test. Abnormal results may lead to a bone marrow biopsy or MRI scan. In a small number of cases, doctors can also identify abnormal proteins in the blood that can be a precursor to the disease.
While rates of multiple myeloma have risen more than 40% since 1990, doctors don’t necessarily think the disease is more common. Most attribute the trend to improved diagnoses and people living longer.
Five-year survival rates have also increased from around 35% in 2000 to more than 60% today. Doctors said that’s a result of better treatment options, and may even be an underestimate given the new drugs available.
In many cases, people with multiple myeloma are still able to pursue normal activities.
“We have a lot of our patients that are on full treatment for their myeloma that can continue to work full time, that can continue their hobbies, that can continue their travel,” Mikhael said. “Obviously, there’s some limitations, but we’ve come a long way in that realm.”
