Living With Multiple Myeloma
- Bruce Springsteen, 76, and wife Patti Scialfa, 72, who is living with multiple myeloma, stepped out in California to support their professional equestrian daughter, 33-year-old Jessica, at a recent competition.
- Scialfa has remained a visible and enthusiastic presence at her daughter’s events, delighting fans with rare public appearances and sweet moments shared on social media, all while she’s managing life with a rare type of blood cancer.
- Multiple myeloma is a rare type of blood cancer that hinders the body’s ability to fight infections. It can cause weakness, dizziness, bone pain, and confusion, among other symptoms. Advancements in multiple myeloma treatments have improved the lives of patients battling the disease.
- It’s important to note that although this type of disease is manageable thanks to treatment advances, multiple myeloma patients face a higher chance of relapse (the cancer coming back), and maintenance treatment is often an important part of one’s cancer journey because it can extend periods of remission.
- What’s also encouraging is that there continues to be new treatment options and therapies, which can include immunotherapies such as CAR-T cells and a growing number of drug combinations. There are a significant number of clinical trials being conducted for multiple myeloma and SurvivorNet has resources about how to access these options.
- Meanwhile, new treatment options are available for patients whose multiple myeloma has returned or not responded to previous therapies. Talvey is approved for those who have had at least four prior treatments, showing tumor shrinkage in over 70% of patients, while Blenrep is back for patients after two prior therapies, with improved effectiveness and a program to protect eye health.
Scialfa—a singer-songwriter and mother of three who has been living with an incurable blood cancer for nearly eight years—appeared in a photo shared on the official Bruce Springsteen fan page’s Instagram, showing her walking alongside her husband at an event in California earlier this month.
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Fans were quick to compliment them, with New York Road Runners president Peter Ciaccia commenting, “Always puts a smile on my face seeing these two in photos together. They look so happy and in love.”
Another commented, “I’m so glad to see Patti out and about and looking healthy!”
“If I ever & a genie comes out, my one wish would be to be this woman for one day, just 24 hours,” wrote a third fan.
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A fourth wrote, “Am I the only one whose first thought was, ‘they look tour ready!'”
Meanwhile, their daughter Jessica, an Olympic equestrian, also shared a sweet video clip on Dec. 11, captioned her Instagram post, “Bring your mom to the course walk day.
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Jessica shared footage of her teaching her mom how to count strides, something fans were delighted to see.
The video was accompanied by the song “Sleigh Ride” by the Brussels Philharmonic Orchestra.
“This is the cutest and the music is in perfect sync,” one fan commented, while another said, “Momma Patti. Such cool footage of the two you together for the world to see. Awesome.”
It’s wonderful to see Jessica’s mom and dad’s continued support over the years for her beloved sport.
Speaking with the United States Equestrian Team Foundation a few years back, Springsteen said, “Patti and I have been involved with the horse world for more than 20 years since Jess started riding when she was five years old.”
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Springsteen continued, “Our lives have been deeply enriched by our involvement in the riding world. I’ve gotten to watch my daughter grow up into a young woman of character and excellence.
“I’ve gotten to watch the best in the world compete year after year, and I know what that takes.”
A throwback photo previously shared by Jessica revealed that Scialfa also rode horses in the past, featuring both mother and daughter dressed in riding gear in an image from more than 25 years ago.
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Scialfa also shared a photo of herself and Springsteen riding horses on their 31st wedding anniversary in 2022, making it clear that horseback riding has remained an important part of their lives.
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Understanding Patti Scialfa’s Cancer Journey
Scialfa said she learned of her early-stage multiple myeloma diagnosis in the Springsteen documentary titled “Road Diary: Bruce Springsteen and The E Street Band,” which was released in October 2024.
Fans learned of her health battle in the documentary, where she’s seen addressing her health struggle, and according to People, she said in the documentary, “I’ve been performing with this band for 40 years. With those first performances, it felt so good to be back onstage.”
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“Touring has become a challenge for me. In 2018, well, Bruce and I were doing a play on Broadway. I was diagnosed with early-stage multiple myeloma.”
She continued, “This affects my immune system, so I have to be careful what I choose to do and where I choose to go. 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.
“That’s the new normal for me right now, and I’m OK with that.”
Understanding Multiple Myeloma
Multiple myeloma is a rare and incurable type of blood cancer. When you have this cancer, white blood cells called plasma cells (the cells that make antibodies to fight infections) in your bone marrow grow out of proportion to healthy cells. Those abnormal cells leave less room for the healthy blood cells your body needs to fight infections. They can also spread to other parts of your body and cause problems with organs like your kidneys.
Sometimes, doctors find multiple myeloma while doing a blood test to look for another condition or when trying to find out what’s causing a patient’s unexplained symptoms.
Doctors use blood and urine tests and imaging tests, such as X-rays or MRIs, to help diagnose multiple myeloma and to guide treatment options. Ultimately, a bone marrow biopsy will confirm the diagnosis.
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Multiple myeloma symptoms can range from tiredness, nausea, and constipation. Other symptoms may include:
- Weakness, dizziness, and shortness of breath, which are signs of a low red blood cell count, are called anemia.
- Bone pain, which could be a sign of a fracture.
- Urinating too much or too little, muscle cramps, nausea, and vomiting are symptoms of kidney failure.
- Confusion is caused by too much calcium in the blood.
- Frequent infections because you have too few white blood cells to fight them.
It’s important to know that these symptoms could be attributed to other conditions. If you experience any of these symptoms or are concerned about any changes to your body, you should address them promptly with your doctor.
Hematologist-oncologist Dr. Adam Cohen lays out your options during the maintenance phase of treatment
Meanwhile, multiple myeloma does cause bone conditions. According to the Multiple Myeloma Research Foundation, 85% of multiple myeloma patients have some kind of bone damage or loss.
“The most commonly affected areas are the spine, pelvis, and rib cage,” the Foundation explains.
The reason for this bone loss or damage is that multiple myeloma disrupts the bone remodeling process. The cancerous myeloma cells keep the cells in the bone responsible for removing old bone and rebuilding new bone from working properly.
The disease can also weaken the bone, resulting in fractures. And it can cause thinning of the bones, leading to osteoporosis [meaning the bones are more porous and more likely to fracture].
And “in advanced multiple myeloma, a patient may lose inches from his or her height due to compressed vertebrae over the course of their illness.”
So bone conditions can be a symptom of multiple myeloma.
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Getting a Diagnosis
Sometimes doctors find multiple myeloma while doing a blood test to look for another condition, or when trying to find out what’s causing a patient’s unexplained symptoms.
According to SurvivorNet’s experts, blood tests are also the way your doctor might learn that you have smoldering multiple myeloma or MGUS, because these conditions don’t usually cause symptoms. Smoldering multiple myeloma and MGUS aren’t cancer, but they can sometimes turn into cancer.
The odds that either condition will become cancer are very small, but to be safe, your doctor will probably check you more closely with blood and urine tests, and sometimes a bone marrow biopsy–removing and testing a small sample of the spongy material inside your bones. These tests can help monitor you for changes that signal you’ve switched over to multiple myeloma, and that you need to start treatment for this cancer. You may also need a bone marrow biopsy to help your doctor make the initial diagnosis.
Doctors use blood and urine tests and imaging tests, such as X-ray or MRI, to help diagnose multiple myeloma and to guide treatment options. Ultimately, a bone marrow biopsy will confirm the diagnosis.
Monitoring your bone strength and health over time will help your doctors understand how, or if, your disease is progressing.
Treatment Options For Multiple Myeloma
Not everyone with multiple myeloma needs treatment right away. If you have smoldering multiple myeloma, your doctor might simply monitor you regularly to see if your disease progresses.
If you develop symptoms or your doctor thinks you need treatment, there are many options. Which of these treatments you receive, and how they are sequenced, depend on several factors, and on whether your treatment team thinks you are a good candidate for a bone marrow transplant.
Bone Marrow (Stem Cell) Transplant
This is also known as a stem cell transplant. It is a procedure to replace diseased bone marrow with healthy bone marrow without myeloma cells. Based on multiple factors, your doctor may decide that a stem cell transplant is best for you. The transplant process can be involved and requires multiple steps. Be sure to discuss this with your treating team to understand what is involved and what options are available.
If you’re not a good candidate for chemotherapy, your treatment options include targeted therapies, biologics, and steroids.
Targeted Therapy
Targeted therapy is now available for patients with multiple myeloma, and targets abnormalities in myeloma cells that allow the cancer to survive. Examples of targeted agents your doctor may use include bortezomib (Velcade), carfilzomib (Kyprolis), and ixazomib (Sarclisa). These drugs are either given in a pill or through an IV and cause myeloma cells to die by preventing the breakdown of certain proteins in myeloma cells. Your doctor may also use other targeted agents in the class of medications known as monoclonal antibodies.
Biologic Therapy
Biologic therapy is another class of medication your treatment team may use to treat your myeloma. These medications use your body’s immune system to help fight and kill myeloma cells. This class of medication is most often given in pill form and includes medications such as thalidomide (Thalidomid), lenalidomide (Revlimid), and pomalidomide (Pomalyst).
Chemotherapy
Sometimes your treatment team may recommend chemotherapy to treat your myeloma. Chemotherapy uses strong medicine to target cancer cells throughout your body. If your doctor recommends a bone marrow transplant, high doses of chemotherapy are used for this purpose.
Steroids
Occasionally, doctors may use corticosteroids such as dexamethasone or prednisone as part of your treatment. Steroids are different from chemotherapy, targeted therapy, and biologic therapy. They work to reduce inflammation throughout your body. Steroids are given as a pill and are also active against myeloma cells.
Radiation
Radiation uses high-dose X-rays to stop cancer cells from dividing. It is sometimes used to target myeloma in specific areas that may be causing you issues or pain. It is also used if there are tumors or deposits of myeloma cells that need to be treated, such as a plasmacytoma — a tumor made of abnormal plasma cells — of the bone.
Sometimes the cancer can return, or relapse, after treatment. If this happens, your doctor can put you on one of the treatments you’ve already tried again, try a new treatment, or recommend that you enroll in a clinical trial.
Any of these treatments can cause side effects, which may include nerve pain and fatigue. Your doctor can adjust your medication if you do have side effects. In general, you should start to feel better once your treatment starts to work.
Extending Your Lifespan With Multiple Myeloma
Then you’ll ultimately reach the maintenance phase of treatment. Now that your doctor has gotten your cancer under control, from here the goal is to keep your disease stable and to maintain your quality of life. The type of maintenance therapy you get and what prognosis you can expect will depend on whether your doctor determines that your multiple myeloma is standard risk or high risk.
One of SurvivorNet’s experts describes the maintenance process for this disease as similar to lawn care. Once you care for your lawn and it’s no longer overgrown (that’s the initial treatment), it will need some tending, but with that attention (such as low doses of maintenance drugs), it can remain healthy.
Why the many phases of multiple myeloma are like caring for your lawn, says hematologic cancer specialist, Dr. Sid Ganguly
Sometimes this disease will return, even when you’re on maintenance therapies. You’ll still have treatments available if this happens.
Though it can be daunting to choose treatments for relapsed multiple myeloma, the medical experts at SurvivorNet are here to help you make sense of them.
Remember that you do have options, and that the goal, which becomes more achievable with each new treatment that’s introduced, is to preserve your quality of life and extend your lifespan.
New Treatment for Heavily Treated Multiple Myeloma
There is encouraging news for patients with multiple myeloma whose disease has not responded to several prior treatments.
In August 2023, the U.S. Food and Drug Administration (FDA) approved Talvey (generic name: talquetama and produced by Johnson & Johnson) for patients whose multiple myeloma has returned after undergoing at least four lines of therapy.
This approval offers new options for patients who still need effective treatment after multiple previous therapies. The decision was based on promising results from phase II studies, including the MonumenTAL-1 trial, which showed that Talvey was able to shrink tumors in more than 70% of patients.
Talvey received accelerated approval, reflecting the significant potential it has to help patients in need. For many living with multiple myeloma, this represents a hopeful step forward in the fight against the disease.
Meanwhile, recent data suggests that BLENREP (belantamab mafodotin) can provide meaningful benefits for patients with relapsed or refractory multiple myeloma, including disease features that are more difficult to treat.
Blenrep (belantamab mafodotin) is now available again for patients whose multiple myeloma has returned or hasn’t responded to at least two previous treatments. It can be used together with bortezomib and dexamethasone (BVd).
Recent studies show that Blenrep can be more effective than before, and it comes with a safety program to help monitor and protect patients’ eyes.
Questions for Your Doctor
If you are facing a multiple myeloma diagnosis, here are some questions to help you begin the conversation with your doctor:
- What stage is my multiple myeloma?
- What are my treatment options?
- What are the possible side effects of your recommended treatment?
- Who will be part of my healthcare team, and what does each member do?
- Can you refer me to a social worker or psychologist who can help me cope with my diagnosis?
Contributing: SurvivorNet Staff
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