Patti Scialfa's Multiple Myeloma Diagnosis
- As Bruce “The Boss” Springsteen and his wife Patti Scialfa are coping with her diagnosis of early-stage multiple myeloma, a rare and incurable type of blood cancer, the loving couple admits they aware that life on earth isn’t infinite, but staying optimistic and vocalizing their thoughts with each other.
- 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.
Although the disease which Scialfa, who has been married to Springsteen since 1991 and joined the “E Street Band” seven years prior, is incurable, it’s important to understand it is manageable with the help of treatment advances. Additionally, multiple myeloma patients are at a higher risk 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.
Read MoreSpeaking at the event, Springsteen told the audience, “Hey, you get up around our age, and those are the things you’re thinking about.
“Patti and I have had to deal with her illness, and you’re worried about. It is a part of your life now, questions of mortality, and it just becomes a part of your life.”
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The “Atlantic City” singer recounted his late friend and fellow musician George Theiss for helping him keep a positive mindset through adversity.
He explained, “Like I say in the film, there’s a lot more yesterdays and goodbyes once you get up around where we are than there was 30 or 40 years ago.”
Springsteen added, referring to his reasoning for making his documentary at his current age, “Well, if we didn’t make it now, I’d be dead pretty soon.
“We got to make these while we can.”
We admire the “Born In The USA” singer of living life to the fullest but we want to point out that there continues to be new treatment options, and therapies considered novel in the fight against multiple myeloma, and an optimistic outlook on life is key when fighting disease.
New treatments in the fight against this disease 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.
Understanding Patti Scialfa’s Cancer Journey
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 is reportedly seen in the film 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.
“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.”
Expert Resources for Multiple Myeloma
- Clinical Trials for Multiple Myeloma: Why They Matter
- “An Important Step”: FDA Approves New Combination Treatment For Newly Diagnosed Multiple Myeloma Patients
- Adding Daratumumab to Front-line Therapy in Multiple Myeloma
- Approach to Relapse in Multiple Myeloma
- Bone Marrow Biopsies: ‘A Vital Part of Diagnosing and Staging Multiple Myeloma’
- Deciding Which Approach to Take During the Maintenance Phase of Multiple Myeloma Treatment
- Adding Sarclisa to Treatment– A Promising New Option for Relapsed Multiple Myeloma
- Are the Treatments the Same for a Second or Third Relapse of Multiple Myeloma?
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.”
Patient Education is Key — Head of Hematology at Johnson & Johnson On Getting Multiple Myeloma Patients Access to Good Information & Care
RELATED: When Multiple Myeloma Returns, SurvivorNet’s Resources
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.
Expert Resources for Multiple Myeloma
- Clinical Trials for Multiple Myeloma: Why They Matter
- “An Important Step”: FDA Approves New Combination Treatment For Newly Diagnosed Multiple Myeloma Patients
- Adding Daratumumab to Front-line Therapy in Multiple Myeloma
- Approach to Relapse in Multiple Myeloma
- Bone Marrow Biopsies: ‘A Vital Part of Diagnosing and Staging Multiple Myeloma’
- Deciding Which Approach to Take During the Maintenance Phase of Multiple Myeloma Treatment
- Adding Sarclisa to Treatment– A Promising New Option for Relapsed Multiple Myeloma
- Are the Treatments the Same for a Second or Third Relapse of 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
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. You 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 bodys immune system to help fight and kill myeloma cells. This class of medication is most often given in pill form and include 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. Which 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.
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?
Multiple Myeloma Relapse
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. Kenneth Anderson, Director of Dana Farber Cancer Institute’s Multiple Myeloma Center, explained in a previous interview with 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.
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 that 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 are a greater than normal level of plasma cells in the bone marrow, 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.
Coping with a myeloma relapse
What’s the Effectiveness of CAR T-cell Therapy?
Your immune system comes equipped with an army of white blood cells, called T cells, that normally protect it from infections and cancer. But sometimes, these cells miss their target. “The cells that help fight cancer unfortunately don’t recognize their own cancer anymore,” Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center, previously told SurvivorNet. CAR T-cell therapy “helps to wake up those cells to be able to fight cancer.”
The entire process involved in getting CAR T-cell therapy can take a few weeks. It starts by drawing your blood and separating out the T cells.
Then, using a virus modified to be harmless, the T cells are genetically engineered to produce proteins called chimeric antigen receptors (CARs) on their surface. These receptors will enable the cells to recognize and attach to a matching protein, called an antigen, on the tumor cell just as a key fits into a lock. The process primes the T cell to “recognize the cancer and to fight it,” Dr. Vose said.
WATCH: Why CAR T-Cell Therapy is an Exciting Treatment to Explore.
Next, the modified cells are multiplied into the millions in a laboratory. You’ll need a lot of them to fight your cancer.
The CAR T cells are specific to your cancer. For example, some types of lymphoma cells have the antigen CD19 on their surface. CAR T-cell therapies for those cancer types only target the CD19 antigen.
A few days before the infusion, you’ll get chemotherapy to clear out some of your immune cells and prime your body to receive the CAR T cells. This will help the CAR T cells work better. Finally, the modified T cells will be infused back into your body to hunt down the cancer.
RELATED: The Revolution in Multiple Myeloma Treatment
CAR T-cell therapy has shown a response rate as high as roughly 80 percent in some blood cancers after other treatments have failed. In lymphoma, more than 54% of people who took the FDA-approved CAR T-cell therapy axicabtagene ciloleucel (Yescarta) and 40% of those who took tisagenlecleucel (Kymriah) achieved a complete response, meaning they no longer had any sign of cancer in their body. With Yescarta, 40% of people were still in remission an average of 15 months after their treatment.
Those who get CAR T-cell therapy have already been through at least two other treatments—usually rituximab (Rituxan) plus chemotherapy and high-dose chemotherapy. “Some of these patients had three, four, or five prior lines of therapy, and we were able to save their lives,” Dr. Stephen Schuster, director of the Abramson Cancer Center’s lymphoma program, told SurvivorNet.
For a full guide of resources, please check out SurvivorNet’s multiple myeloma guide HERE.
Contributing: SurvivorNet Staff
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