Recognizing the Signs of Multiple Myeloma
- A new mom, Corinne Torney, experienced persistent back pain and fatigue that were initially dismissed as postpartum issues, but a second opinion revealed she had multiple myeloma.
- Her diagnosis required immediate, intensive treatment—including chemotherapy and two stem‑cell transplants—because her cancer was classified as high‑risk.
For high-risk patients, treatment often includes lenalidomide combined with a proteasome inhibitor such as Velcade, according to Dr. Kenneth Anderson of the Dana-Farber Cancer Institute. - Retired news anchor Tom Brokaw has managed multiple myeloma since 2013 with the help of Revlimid (lenalidomide), which he says has caused him no noticeable side effects and has played a major role in his stability.
- Experts note that lenalidomide offers significant survival benefits, with studies showing median overall survival gains of roughly two and a half to three years when used continuously.
- Brokaw’s experience highlights how maintenance therapy—especially with drugs like Revlimid—can help people with multiple myeloma maintain quality of life and keep the disease under control over long periods.
- “If you look at the most recent meta-analysis of clinical benefit from lenalidomide, you’re seeing survival gains of two and 1/2 to three years as a median,” said Dr. Paul Richardson of the Jerome Lipper Multiple Myeloma Center. “And that’s not progression-free survival, that’s overall survival.”
Corinne Torney says she had recently welcomed her daughter when she began experiencing persistent back pain.
Multiple myeloma affects the immune system and can cause symptoms such as bone pain, fatigue, and cognitive challenges. While it isn’t curable, it can be treated and managed with intensive therapy.
“Multiple myeloma is a cancer where plasma cells grow out of proportion to the other cells. And because of that, they can cause different symptoms, and that’s how we diagnose it,” explained Dr. Nina Shah, a hematologist at UCSF.
Once Corinne’s care team understood the full extent of her disease, they moved quickly.
“I met with the doctors, and he said because my disease was so aggressive and high-risk that we were going to get started right away,” she recalled.
For high-risk patients, treatment often includes lenalidomide combined with a proteasome inhibitor such as Velcade, according to Dr. Kenneth Anderson of the Dana-Farber Cancer Institute. Corinne’s treatment plan included chemotherapy and two stem‑cell transplants.
WATCH: Standard Risk vs. High Risk Multiple Myeloma
Risk level in multiple myeloma is determined by specific genetic changes:
- Standard risk often involves extra copies of certain chromosomes.
- High risk is typically linked to the loss of part of chromosome 17.
These differences influence how aggressive the cancer is. While the induction and transplant phases of treatment are similar for all patients, the maintenance phase varies based on risk.
Reflecting on her journey, Corinne hopes others will listen closely to their bodies and feel empowered to seek additional medical opinions when something doesn’t feel right.
“I just want others to pay attention to your body, and if you get an answer from a doctor that you don’t like, get a second, third, fourth opinion and always advocate for yourself.”
WATCH: The Difference a Second Opinion Can Make
National Cancer Institute chief of surgery Dr. Steven Rosenberg echoes that message:
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care.”
“Finding a doctor who is up on the latest information is important, and it’s always important to get other opinions so that you can make the best decisions for yourself in consultation with your care providers,” Dr. Rosenberg added.
Legendary News Anchor Tom Brokaw Received Multiple Myeloma Treatment Lenalidomide (Brand Name: Revlimid)
Tom Brokaw, 85, has relied on cutting-edge treatment to manage his condition. One breakthrough, Revlimid (lenalidomide), has been central to his recovery journey. Used both in combination therapy and low-dose maintenance, the oral drug targets myeloma cells and helps keep the immune system alert for relapse.
WATCH: Veteran journalist Tom Brokaw shares his thoughts on the medical community and the patient experience.
“The Revlimid thing for me has been no side effects whatsoever,” Brokaw told SurvivorNet.
“I think that I’m doing as well as I am in part because of Revlimid. I’ve been very fortunate, of course, in not having a reaction to a lot of the very powerful drugs that I am taking.”
Experts say Brokaw’s experience reflects broader gains in treatment.
“If you look at the most recent meta-analysis of clinical benefit from lenalidomide, you’re seeing survival gains of two and 1/2 to three years as a median,” said Dr. Paul Richardson of the Jerome Lipper Multiple Myeloma Center. “And that’s not progression-free survival, that’s overall survival.”
He added, “Lenalidomide is really conferring tremendous clinical benefit by virtue of its continuous use, and it’s impacting survival and progression-free survival in a remarkably substantial fashion.”
How Brokaw Managed to Cope With His Diagnosis
He was diagnosed with multiple myeloma in 2013.
“I didn’t go into a meltdown of some kind. I was very cool about it. I was kind of in two parts: I was operating as a journalist human being, and the other part was kind of on the outside looking in, saying, ‘This is a big deal, you’ve got to stay cool.’” Brokaw previously explained in a column.
Brokaw noted that he didn’t want this diagnosis and its treatment to hold him back from the life he wanted to keep living.
SurvivorNet previously spoke with Brokaw in his Florida home, where he shared some details about his treatment, which included Revlimid.
Low doses of Revlimid are then used as maintenance therapy to help keep the immune system on alert and target the myeloma in case it reemerges within the body.
“The Revlimid thing for me has been no side effects whatsoever,” Brokaw previously told SurvivorNet.
“If you look at the most recent meta-analysis of clinical benefit from lenalidomide, you’re seeing survival gains of two and 1/2 to three years as a median by virtue of its use. And that’s not progression-free survival; that’s overall survival,” Dr. Richardson said.
“What we’re realizing is that lenalidomide (Revlimid) is really conferring tremendous clinical benefit by virtue of its continuous use, and it’s impacting on survival and progression-free survival in a remarkably substantial fashion,” Dr. Richardson added.
Brokaw’s experience with Revlimid as maintenance therapy is a testament to the importance of ongoing treatment and management of multiple myeloma. While the disease may not be curable, maintenance therapy can help patients maintain a good quality of life and control the disease for extended periods.
Helping Patients Better Understand Multiple Myeloma
- Diagnosis: Do I Have Multiple Myeloma?
- Antibody as Part of Initial Treatment For Multiple Myeloma?
- Can Multiple Myeloma Patients Achieve a Durable Remission After Induction Therapy & Skip or Delay a Stem Cell Transplant?
- Choosing the Best Treatment for Relapsed Multiple Myeloma
- Choosing the Best Treatment Path in the Relapsed/Refractory Multiple Myeloma Setting
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 your body’s healthy blood cells to fight infections. They can also spread to other parts of your body and cause problems with organs like your kidneys.
“In general, having blood cancer means that your bone marrow is not functioning correctly,” Dr. Shah explained to SurvivorNet.
Known risk factors for multiple myeloma include your age, family history of cancer, and whether you have monoclonal gammopathy of undetermined significance (MGUS). MGUS is a condition that occurs when you have too much monoclonal protein in your blood and bone marrow.
Most people diagnosed are in their 60s. However, people younger than 60 can also get this type of cancer, and if you have a close relative with multiple myeloma, that can increase your risk.
WATCH: Recognizing multiple myeloma symptoms.
Multiple myeloma can cause symptoms such as weakness, dizziness, bone pain, and confusion, among other 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.
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.
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 longer periods.
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 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 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 relapses, 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 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?
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