Patti Scialfa's Multiple Myeloma Diagnosis
- As Bruce Springsteen’s wife Patti Scialfa has been battling early-stage multiple myeloma, a rare and incurable type of blood cancer, since 2018, the iconic singer-songwriter is offering all of his love and support for his beloved partner and will be there “every step of the way.”
- 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.
View this post on Instagram
The source continued, “Mark my words, Bruce is going to drop everything going on in his life to attack this situation head-on and make sure he is there every step of the way for Patti.
“He doesn’t know any other way to do things.”
Scialfa, also a singer and a mom of three, has been living with the rare and incurable type of blood cancer, for six years, which is the samedisease that journalist Tom Brokaw is living with.
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.
It’s also encouraging is that there continues to be new treatment options, and therapies considered novel a few years ago are very quickly gaining traction. These can include immunotherapies such as CAR-T cells and a growing number of drug combinations. The myeloma specialists call them triplets, and there are even quadruplets composed of four drugs.
There are also a huge number of clinical trials being conducted for multiple myeloma. SurvivorNet has extensive resources about how to access these options as well. At every stage of cancer, it is critically important to be your own advocate. For relapsed multiple myeloma it can be very challenging to discover the option that is right for you. Academic centers and large comprehensive cancer centers are places that most often have access to the latest treatments and research and its often possible to get a second opinion at one of these centers.
Patti Scialfa’s Cancer Journey Explained
Scialfa said she learned of her early stage multiple myeloma diagnosis in the new Springsteen documentary titled “Road Diary: Bruce Springsteen and The E Street Band.”
Fans learned of her health battle in the documentary, which recently made its premiere at the Toronto International Film Festival (TIFF). The film is set for release on Hulu and Disney+ on October 25.
RELATED: Do Bruce Springsteen’s Stomach Ulcers Increase the Risk For Cancer?
Scialfa, who has been married to Springsteen since 1991 and the “E Street Band” years prior, in 1984, is reportedly seen in the film addressing her health struggle.
“I’ve been performing with this band for 40 years. With those first performances, it felt so good to be back onstage,” she said in the documentary, according to People.
“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.”
RELATED: When Multiple Myeloma Returns, SurvivorNet’s Resources
She explained further, “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.
Helping Patients Better Understand Multiple Myeloma
- A Great New Option For Multiple Myeloma Patients: Daratumumab Now Available As a Quick Shot, Replacing Long Infusions
- Adding Daratumumab to Front-line Therapy in Multiple Myeloma
- Antibody as Part of Initial Treatment For Multiple Myeloma?
- Approach to Relapse in Multiple Myeloma
- Are the Treatments the Same for a Second or Third Relapse of Multiple Myeloma?
- Bone Marrow Biopsies: ‘A Vital Part of Diagnosing and Staging Multiple Myeloma’
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.
Hematologist and SurvivorNet advisor, Dr. Nina Shah, helps you understand this rare cancer
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
Treatment Options for Multiple Myeloma
Treatment for multiple myeloma depends on your risk level. Some patients are considered standard risk, while others are high-risk. Your risk depends on irregularities in the chromosomes of their cancer cells:
- Standard Risk – Extra copies of some chromosomes typically characterize this.
- High Risk – A missing part of chromosome number 17 typically characterizes this
These gene differences control the aggressiveness of the cancer cells. According to Dr. Kenneth Anderson, director of the Multiple Myeloma Center at Dana Farber Cancer Institute, standard risk has “a better prognosis.” In contrast, high-risk myeloma “confers a much poorer outcome.”
Why the many phases of multiple myeloma are like caring for your lawn, says hematologic cancer specialist, Dr. Sid Ganguly
The standard treatment approach for multiple myeloma goes from the induction phase, the stem-cell transplant phase, and then the maintenance phase.
- Induction Phase: This phase is the same regardless of risk. It consists of triplet drug therapy, which includes an immunomodulatory drug (Revlimid or Pomalyst), a proteasome inhibitor (Kyprolis, Velcade, or Ninlaro), and a steroid (dexamethasone or prednisone).
- Stem-Cell Transplant Phase: This phase is the same regardless of risk. It consists of chemotherapy coupled with a stem-cell transplant.
- Maintenance Phase: This phase will differ based on the risk profile.
Maintenance treatment is essential because it keeps the cancer at bay. Since multiple myeloma patients face the risk of relapse even if the cancer is put into remission, maintenance treatment helps keep the cancer in remission for more extended periods.
SurvivorNet has shared retired journalist Tom Brokaw’s cancer treatment journey, which includes the maintenance treatment Revlimid (generic name lenalidomide). This treatment is an oral medication that has helped treat patients living with multiple myeloma. Combined with other therapies, standard doses of lenalidomide kill off myeloma cells.
WATCH: Tom Brokaw explains his cancer journey and breakthrough treatment.
This drug activates immune cells that kill bacteria, viruses, and cancers. It also reduces vital blood flow to cancerous tumors, helping kill them. However, some patients don’t tolerate lenalidomide well because of some of its potential side effects, including nausea, vomiting, swelling of the limbs and skin, and liver problems.
When Multiple Myeloma Relapses, You Still Have Options
When your multiple myeloma comes back within about a year, your disease is generally classified as ‘high risk.’
When multiple myeloma returns after treatment, “It usually means that there were residual cells, even in very small numbers. They were either resistant to the treatment from the start, or they acquired resistance as the treatment was growing,” Dr. Anderson explains to SurvivorNet.
In other words, not every myeloma cell in your body is precisely the same. Some start with a set of mutations that can give them resistance to treatments and make them more likely to relapse, whereas others develop mutations as a result of treatment.
WATCH: What Is the Standard of Care for the First Relapse?
The Signs of a Multiple Myeloma Relapse
- Increased levels of monoclonal antibodies: myeloma cells are cancerous plasma cells in the bone marrow that overgrow and produce abnormal proteins. These abnormal proteins are released in the blood and can be detected by physicians. When the levels of these increase substantially, that can be a sign multiple myeloma has relapsed.
- Increase in plasma cells in the bone marrow: Oncologists can use magnetic imaging, like MRI or PET scans, to see if there is a greater than normal level of plasma cells in the bone marrow, which is typical of overly dividing myeloma cells.
- Bone fractures and lesions: Myeloma cells activate the cells that break down bones and deactivate the cells that build up bones, which can result in fractures or small holes in bones. Oncologists can use X-rays or CT scans to detect bone damage indicative of relapse.
When or if multiple myeloma returns, remember that many treatment options exist. Oncologists may turn to therapies approved only for clinical trials, namely CAR T-cell therapy.
WATCH: A Step-By-Step Guide to Having CAR T-Cell Therapy
“We’re using the CAR T-cells now literally in patients who have no other options,” explains Dr. Anderson. CAR T-cells are immune cells harvested from a patient’s body, genetically modified to target specific cells (like multiple myeloma), and then reinfused back into a patient.
Second-generation drugs, which are more recent adjustments and improvements to existing therapies, are an option to treat resistant forms of the disease.
For relapsed patients, the second-generation treatments include:
- Kyprolis (carfilzomib) – is a proteasome inhibitor.
- Pomalyst (pomalidomide) – 2nd generation immunomodulatory.
- Dexamethasone – a mainstay of myeloma treatment in both relapsed and initially diagnosed patients.
- Daratumumab, an immunotherapy, is also added to the mix. More specifically, Dara is a monoclonal antibody that ‘tags’ cancer cells for quick and efficient recognition by the immune system.
For more options following multiple myeloma relapse, clinical trials may offer a solution. SurvivorNet has extensive resources about how to access these options as well.
A U.S. Food and Drug Administration (FDA) advisory panel recently expressed support for previously approved CAR T-cell therapies Carvykti and Abemca to treat adults diagnosed with relapsed or refractory multiple myeloma sooner in their treatment journey. During clinical trials, the treatments saw a “59%” reduction in multiple myeloma disease progression in clinical trials for patients who received one prior line of treatment. During these same clinical trials, some patients experienced “early deaths”; however, experts reviewing the drugs felt the benefits outweighed the risks.
The FDA will further review Carvykti and Abecma’s supplemental Biologics License Applications (sBLA), which is a necessary step during the drug approval process. These treatments can be available to multiple myeloma patients earlier in their treatment journey if approved.
Questions for Your Doctor
If you are facing a multiple myeloma diagnosis, you may be interested in the treatment Tom Brokaw has had success with. Here are some questions to help you begin the conversation with your doctor:
- What stage is my multiple myeloma?
- What are my treatment options?
- Am I a good candidate for Revlimid?
- 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
Learn more about SurvivorNet's rigorous medical review process.