Many don’t know that chest numbness after mastectomy is an unintentional, yet real, powerful and potentially permanent side effect. Many also don’t know that it’s possible to reverse or mitigate numbness.

Whether you are in active diagnosis, at high risk due to family history or a genetic marker, trying to understand your preventive options or have already been through a mastectomy, here’s what you need to know about post-mastectomy chest numbness and how you can talk to your care team about it.

How Post-Mastectomy Chest Numbness Happens

Sensation in our bodies is made possible by nerves. Like a wiring system, nerves run throughout our entire bodies and send signals to the brain that allow us to feel touch, temperature and pain. When nerves are cut — a common part of surgery — the connection between that part of the body and the brain is lost, resulting in numbness.

In any type of mastectomy, nerves must be cut to remove the breast tissue. Historically, nothing was done to repair the nerves, and loss of sensation was generally accepted in the surgical and patient communities. But, perspectives are shifting. In 2017, The New York Times published a breakthrough article covering the loss of sensation after mastectomy, giving a voice to many patients and illuminating their deep dissatisfaction with chest numbness. With advances in nerve repair and close collaboration between the breast surgeon and plastic reconstructive surgeon, numbness no longer has to be the accepted norm. We can help minimize the impact to the nerves during the mastectomy (while being oncologically safe) and improve the chances of repair during reconstruction.

Feeling in the chest is a factor of both safety and quality of life. Sensation helps us navigate daily situations and helps us feel connected to others.

Chest numbness affects the ability to feel if the water while showering is too hot, if hot oil splatters while cooking, if you’re getting a sunburn and many other everyday experiences. Household items like heating pads and electric blankets can also pose a potential risk. And, unfortunately, the risks and associated damage aren’t just relevant to the immediate postoperative period but become a part of everyday life.

Feeling connected to ourselves and to others is essential in how we see our place in the world. Patients have shared that navigating the awkwardness and not being able to figure out their space due to loss of sensation is a truly bizarre feeling. Reconnecting with others again, but this time with a numb chest, can be difficult. The full embrace of a hug is gone. They can’t feel a loved one’s head resting on their heart. These moments of connection have changed.

Patients who have had breast neurotization — the surgical nerve repair technique that can enable sensation to be regained in the chest — say otherwise; some days, they forget about what they went through because numbness isn’t serving as a constant reminder.

Breast neurotization is a technique performed during reconstruction and some revision procedures, in which nerves that were cut during mastectomy are repaired and reconnected using a nerve allograft, potentially restoring sensation over time as the nerves heal and grow.

It takes two surgeons to do the job: a breast surgeon and a plastic reconstructive surgeon, both trained in nerve anatomy and breast neurotization. Each surgeon brings a different perspective. As a breast surgeon, I don’t perform neurotization, but what I do while performing the mastectomy sets the foundation.

I talk with my plastic surgeon counterpart about what I’m seeing during the mastectomy and which nerves may be candidates for neurotization so when it’s time for the reconstruction, the plastic surgeon and I have a shared vision based on the patient’s actual anatomy.

It’s incredibly important to talk with your care team about post-mastectomy chest numbness. A cancer diagnosis or being high risk can bring a lot of emotions, and it can be difficult to think beyond getting the cancer out or taking action to reduce your risk. But feeling like yourself again after mastectomy is also tremendously important. With all the advancements in surgery and treatment options, a lot more is possible in breast cancer care. You deserve the best overall outcome and to feel whole again.

By talking with both breast and plastic surgeons, you can learn more about your options and what’s possible for you. Here are some questions to ask to start learning more.

Q: What does numbness feel like in a practical sense?

Think of the last time your mouth was numbed at the dentist or your foot fell asleep. Now try to imagine that feeling on a larger scale: on your chest. Patients have reported that it can affect their ability to know the physical space they take up. Bumping into door frames, feeling like their breasts are larger than they are or like they’re not part of their body and more can be regular occurrences. Numbness can also affect the ability to feel temperature and pressure as well as cause phantom itch — an itch you can’t scratch because its source doesn’t exist.

While it’s different for everyone, asking your surgeon what numbness might feel like day to day can provide you with a deeper understanding.

Q: Can my nerves regenerate on their own?

Some patients might regain some sensation on their own, but this happens spontaneously, and many don’t get feeling back at all. By talking with your care team about nerves — how they work, regeneration and more — you can get the contextual information you need to make an informed decision about what’s best for you.

Q: When is breast neurotization performed?

The procedure is done during breast reconstruction surgery (or some revision procedures), which can happen immediately after mastectomy or later on, sometimes even months or years later, and is performed by a plastic reconstructive surgeon with specialized training in microsurgery. Having nerves repaired sooner rather than later typically provides the best outcomes.

When the procedure can take place will depend on what’s best for your treatment plan. Even if you’re planning a delayed reconstruction or a revision procedure, it’s possible that breast neurotization may be an option for you.

Q: How long will it take for sensation to return after neurotization surgery?

Having reasonable expectations for regaining sensation is important. Nerves are slow growing, so it can take several months and up to two years to regain sensation after neurotization. Many patients report “zaps” and “tingles” in the months following surgery. These are often good signs, as they mean your nerves are regenerating.

Everybody’s level of sensation is different before surgery and each person’s recovery will vary. Generally, it will not be 100% of what it was before surgery. Your care team can provide more insight based on your case.

Q: Do you have other patients I could talk to and learn more about their experience?

Many patients who’ve had the procedure are willing to share their story. Speaking with someone who has experienced chest numbness and has had breast neurotization surgery can provide a real-life perspective that surgeons usually can’t offer.

For more news on cancer updates, research and education, don’t forget to 

Articles

Sensations in the chest after a mastectomy matter because they affect safety and quality of life, an expert said. 

How to Talk to a Care Team About Post-Mastectomy Chest Numbness

Navigating life with cancer can be a journey fraught with challenges, from the physical and emotional toll of treatment to the financial burdens that often accompany a diagnosis. In the midst of this, some patients find themselves facing other hardships: exploitation and fraud.

reports on the disturbing trend of scammers targeting patients with cancer. As one expert aptly notes, a cancer diagnosis can render individuals vulnerable not only medically but also financially, creating fertile ground for such attacks.

The feature delves into several incidents, from text message scams to institutional cyberattacks on prominent cancer centers. The accounts of patients reportedly receiving threatening emails following cyberattacks and the theft of millions of patients’ personal information underscore the magnitude of this issue.

Ransomware attacks, phishing scams and identity theft are among the nefarious tactics employed by cybercriminals, taking advantage of patients’ fears and uncertainties for financial gain. The sophistication of these tactics and the abundance of personal information available can pose a threat to patients’ well-being.

Elsewhere in this issue, an expert discusses some of the issues faced by adolescent and young adult, or AYA, patients as they transition into adult care over time, including long-term concerns regarding fertility and cognitive impairment.

“It’s such a struggle because they might not be thinking about some of these long-term effects. They might not be thinking about fertility or ‘What classes am I going to take next semester?’ because they’re just trying to get through day to day,” Lillian Dugan, director of programs for the Dear Jack Foundation, explained as part of our “Speaking Out” series.

This issue also looks at how a healthy diet has been shown to be associated with sustained minimal residual disease negativity in some patients, provides expert insight into post-mastectomy chest numbness in patients with breast cancer and explores how the BCMA protein has been targeted in the treatment of multiple myeloma.

As always, we hope you find our stories inspirational and informative. Thank you for reading.

In the Spring 2024 issue of CURE® Magazine, we also cover financial hardships caused by scammers who purposely target patients with cancer. 

Patients With Cancer Facing Fraud and Exploitation

In this issue of CURE, we examine the science behind bispecific antibodies such as Tecvayli (teclistamab-cqyv) — how they work and the impact they have had on patients with multiple myeloma.

Those patients include Cindy Brown, who in 2020 joined a clinical trial at the City of Hope Comprehensive Cancer Center in Los Angeles for Tecvayli, an immunotherapy drug that targets a protein called B-cell maturation antigen, or BCMA, found specifically on multiple myeloma cells. Tecvayli activates a patient’s immune system by binding to the CD3 receptor on T cells and the BCMA protein on myeloma cells. Bispecific antibodies act as a bridge and can bring cells or proteins on the cell membrane together to facilitate certain processes like triggering the immune system.

Therapies such as Tecvayli offer providers a targeted approach, honing in on cancer cells while sparing healthy tissues with the goals of fewer side effects and better outcomes for patients. With the FDA approval of Tecvayli and other BCMA-targeted therapies like Elrexfio (elranatamab-bcmm), a new era in multiple myeloma treatment has arrived.

However, questions persist regarding the optimal timing and sequencing of these therapies, as well as potential mechanisms of resistance and long-term management strategies. Ongoing research continues to examine these complexities, pointing the way toward potential future breakthroughs and treatment options.

More CURE® coverage on multiple myeloma:

Early Intro to Carvykti Is 'Promising' for Patients With Myeloma

Linvoseltamab to Be Reviewed for Relapsed, Refractory Myeloma

FDA Approves Dosing Reduction of Tecvayli in Relapsed, Refractory Myeloma

Blenrep Combo for Relapsed, Refractory Myeloma Improves Outcomes

Newer technologies can speed up innovations needed to refine this approach, and the next generation of drugs are likely to be even more powerful and applicable to a growing list of cancer types.

Cindy’s story is illustrative of the impact that immunotherapy has had in transforming the lives of patients with cancer.

“It’s been remarkable for me in terms of success. It’s super well-tolerated,” Brown says. “If you met me and didn’t know who I was, you would have no idea I was sick.”

Professor of Medicine Chair, Department of Breast Medical Oncology

The University of Texas MD Anderson Cancer Center

Here is a run-down of some topics we covered in the Spring 2024 issue of CURE.

The Impact of Immunotherapy on Multiple Myeloma

A healthier diet that consists of plant-based foods and seafood was associated with sustained minimal residual disease (MRD) negativity in patients with multiple myeloma, according to study results.

Sustained MRD (assessment of malignant cells or DNA remaining in a patient's body after treatment) negativity is important for patients with multiple myeloma because it is associated with improved long-term survival. The purpose of this study was to better understand whether modifiable risk factors, such as diet, were associated with this outcome, Dr. Urvi A. Shah, lead author on the study and assistant attending physician in myeloma service at Memorial Sloan Kettering Cancer Center in New York, said in an interview with CURE. Researchers did this through evaluating stool samples and dietary surveys from patients with multiple myeloma who were receiving Revlimid (lenalidomide) as maintenance therapy, which is a standard of care for this disease.

Savor the Flavor With Sauces for Cancer Survivors

Results, which were published in Clinical Cancer Research, demonstrated that healthier dietary protein, such as that derived from seafood and plants, correlated with higher stool butyrate levels, which in turn was associated with higher sustained MRD negativity rates. Butyrate is a short-chain fatty acid with anti-cancer and anti-inflammatory effects, and it is made by beneficial bacteria in the gut microbiome. Additionally, consumption of dietary flavonoids (plant nutrients with antioxidants) correlated with stool butyrate concentration, which was associated with sustained MRD negativity.

“Even though it’s a small study, it’s the first study to show an association that people who are eating healthy diets have higher amounts of healthier bacteria in the stool and higher sustained MRD negativity rates,” Shah said. “It could empower patients, because up until now, we just say, ‘Take this drug. There’s nothing else you can do.’ But now we can say, ‘Take this drug, but you also have this opportunity to further improve your outcomes through a healthier diet.’”

She also noted that in addition to it being a small study, it is a retrospective study, which means there was no intervention group and patients were only observed in what they were already eating. However, the results are still powerful, and the associations were significant. “Patients hearing about this could feel empowered and feel in control to potentially take measures beyond just the chemotherapy to improve their outcomes and lifestyle,” Shah said.

Moreover, even if a healthier diet did not affect a patient’s myeloma outcome, it is likely to positively affect other comorbidities, such as cardiovascular disease, diabetes and obesity that are associated with worse outcomes overall. “We have shown a direct mechanism in myeloma, but it will also help their overall health,” Shah said. “I don’t see any major downside to gradual healthier dietary switches.”

Eating a plant-based diet has been associated with sustained MRD negativity for patients with multiple myeloma.

Taking Control of Diet May Improve Outcomes for Multiple Myeloma

Since receiving a diagnosis of breast cancer in 2021, Lashelle Scott, who lives in the Houston area, has faced hurdles such as the need to find and enroll in an insurance plan before beginning treatment and the process of navigating cancer care during the COVID-19 pandemic.

Scott’s treatment journey to date for stage 3 HER2-positive, BRCA2-positive breast cancer has included a partial mastectomy and targeted therapy, and the morning she spoke with CURE® she was trying to figure out how to cover her out-of-pocket costs for chemotherapy due to an insurance snafu that month.

But Scott has had to deal with another level of aggravation, as the political consultant and patient advocate says she has been bombarded with text messages, sometimes five or six a day, and emails offering her participation in clinical trials that don’t exist, inviting her to enroll in fraudulent insurance plans and promising a cure for her cancer.

“It’s infuriating because I’m a realist, so I know there’s not a cure,” Scott says. “Cancer just really goes in remission. So targeting me with a text message saying, ‘There’s a clinical trial for you for a cure’ — last year, I had all these text messages from this company that was sending me this information that I knew was false, and I’m like, ‘First of all, how did you get my information?’ I just thought it was weird.”

Patients with cancer, such as Scott, are particularly vulnerable to potential fraud and exploitation, experts tell CURE®.

“[A patient who receives] a cancer diagnosis clearly is in a state of vulnerability medically, [and] could be financially as well,” says S. Duke Han, professor of psychology and family medicine at Keck School of Medicine of the University of Southern California in Los Angeles. “And that creates, as we know, lots of ripple effects. Whenever a person is in a state of dependency, it makes the situation more prone to financial abuse.”

Examples of exploited patients can be found in local news across the country, from a Texas woman who was accused in 2009 of stealing tens of thousands of dollars from a neighbor who was receiving chemotherapy and radiation treatment to a New Jersey man with cancer who, according to a 2019 report, lost $18,000 in a phone scam to a man masquerading as his local sheriff.

Along with personal acts of attempted exploitation and fraud, attacks are increasingly occurring at an institutional level.

Patients of the Fred Hutchinson Cancer Center in Seattle reported receiving threatening emails from hackers following a 2023 cyberattack that resulted in leaked personal information of approximately 1 million patients, according to 

That same year, the personal information of millions of patients of Nashville-based HCA Healthcare was stolen and put up for sale, according to CNBC. The University of California San Diego’s health system was the target of multiple class-action lawsuits in 2021 following a data breach, according to a report from Law360. The University of Texas MD Anderson Cancer Center in Houston was the subject of a trio of data breaches across 2012 and 2013, in which unencrypted hardware containing the data of nearly 35,000 patients was stolen or lost.

Annual ransomware attacks more than doubled between 2016 and 2021, according to a study of 374 such attacks published in JAMA Health Forum that found that those attacks exposed the personal health information of nearly 42 million patients. Ransomware, as defined by the Cybersecurity and Infrastructure Security Agency, is “an ever-evolving form of malware designed to encrypt files on a device, rendering any files and the systems that rely on them unusable. Malicious actors then demand ransom in exchange for decryption.”

“Cybercriminals are attacking hospitals with no concern for the condition of the individuals whose information they’re extracting,” says David Jaffray, who joined The University of Texas MD Anderson Cancer Center in 2019 as the institution’s first chief technology and digital officer. “They have their own agenda and one objective, which is to gain some wealth through the theft of information or through putting organizations through the stress of a ransomware situation where they lose functionality. There’s no mercy out there in this regard.”

Phishing, per the Federal Trade Commission, is an online scam using communication appearing to be from a well-known source in order to trick the attempted victim into providing personal information.

“Occasionally, we get feedback from our patients: ‘Somebody phoned me asking suspicious questions and it appeared to be an MD Anderson [phone] number. How did that happen?’” Jaffray says. “Unfortunately, it’s relatively straightforward to spoof the caller ID, and somehow these criminals have learned this individual is a patient at MD Anderson.

“It could be from a conversation they had or through a post they made on social media. This is a kind of example that we’re seeing in the ecosystem where bad actors are assembling bits and pieces to convince these individuals to share even more.”

It’s hard to know exactly how scammers intend to use the information they extract from patients, Jaffray says.

“We can’t get fully into the mind of the cybercriminal, but once they start to build more and more detail about you through the collection of additional information, they can go anywhere with it,” he says. “And there’s actually an entire market out there of this kind of information being used for a variety of different scams.

“And so, the building up of that picture, with as many credentials as possible, becomes a marketable asset for these cybercriminals to use for a variety of different purposes. They could use it to open up a bank account and submit a false tax return so that your refund goes to the wrong person, for example. They don’t necessarily use the information that is collected in the nature of the scam, so someone proposing a clinical trial opportunity may just use that information to get your insurance information that they can use for a totally different exploit.”

It’s been more than 20 years since Eric Drew, then 36 and hospitalized for acute lymphoblastic leukemia, learned he was the victim of identity theft.

“When this was all happening to me, it was hard to isolate the identity theft from the medical battle as it was all one struggle,” said Drew, of Los Gatos, California. “So not only was I a victim of identity theft but my identity as a person was shattered as well — people don’t realize that with a cancer diagnosis, your entire identity as a person goes out the window. I mean, my identity before diagnosis was Eric Drew, 6 [foot] 3 [inches] and 220 pounds, high school football quarterback, part-time model, successful business development executive, etc., etc., and now my identity is a patient number, actually they refer to me as a hospital room number. … Everything that was part of who I was is gone already, and to attack someone in such a vulnerable point in their lives is just absolutely horrific.”

“It’s no secret that going through cancer is costly — it’s costly emotionally, but it’s costly financially as well,” says Han. “And so, particularly as people are navigating treatments, those often come with costs, and if someone becomes a victim of scam or fraud in the midst of going through treatment, your financial well-being can be threatened, and it can be really devastating.”

Drew began receiving credit card application notifications during his second bone marrow transplant, followed by thousands of dollars in bills. He eventually learned that his information had been stolen by a technician working at the Seattle Cancer Care Alliance, where Drew had previously received a bone marrow transplant.

The technician, Richard W. Gibson, claimed to have gotten his information from a paper in a restroom wastebasket, according to Drew. In 2004, Gibson was sentenced to 16 months in prison and ordered to pay at least $15,000 in restitution as the first person in America to be sentenced under the Health Insurance Portability and Accountability Act, which had taken effect the previous year, as reported by The Associated Press.

“This court considers your behavior in this case to be some of the most deplorable I’ve seen in 15 years on the bench,” The Associated Press reported U.S. District Judge Ricardo Martinez as telling Gibson.

Han, whose collaborators include the National Center on Elder Abuse at the USC Center for Elder Justice, says the center and the team from his Han Research Lab in USC’s department of psychology have observed the increasingly sophisticated techniques deployed by scammers.

“When email first came out, scammers latched on email scams. And when cellphones became more prevalent, cellphone scams became more prevalent. I think the more AI [artificial intelligence] and other sorts of machine learning and technological advances happen, there’s going to be a corresponding increase in their use for scam and fraud,” Han says.

Drew, in remission since 2004 and the founder of the WeHeal Foundation patient advocacy and education organization as well as the identity theft prevention and restoration company Knightsbridge Castle, knows how much more sophisticated tactics have become since his ordeal.

“Access to consumer marketing data is just at unreal levels. … [Scammers] might not be able to get access to the medical record, but they can figure out who [patients] are seeing, where they’re going,” Drew says. “There’s so much information out there that wouldn’t be hard to put together. And then to offer them a phishing scam saying, ‘You know, we got this clinical trial that can save your life,’ I mean, that’s just horrible.”

“If you’ve been given a terminal cancer diagnosis, and you’ve been told by a physician and an oncologist that although it’s potentially treatable, it’s not curable, those are devastating words to hear,” says Dr. Skyler B. Johnson, physician-scientist at Huntsman Cancer Institute at the University of Utah and assistant professor in the department of radiation oncology at the university.

“If you are sent a clinical trial that is offering a promise of a potential cure or you hear about an alternative medicine clinic overseas that has cured patients like you and in your situation, that allows you to take some of that fear, some of that anxiety, that uncertainty that you have about the future and develop some hope and find some certainty,” Johnson said. “And so I think there are some psychosocial and emotional characteristics that make cancer patients particularly vulnerable to these issues.”

Cancer’s complexity is also a contributing factor, as Johnson explains. “People think of cancer as one disease, but we know that it’s thousands of different diseases with thousands of different treatments,” he says. “And so because it’s so complex, it’s hard for people to understand. … When they don’t understand their diagnosis, they don’t understand the treatments, and that can lead to a lack of confidence, and that’s another major issue.

“So I think cancer is a particular area where misinformation, disinformation, unscrupulous actors can really thrive because they can prey on people’s fears and anxieties and uncertainties and lack of confidence in the treatment options that they have. And they can take advantage of that.”

Scott, who serves as a patient advocate via organizations including Living Beyond Breast Cancer, the Tigerlily Foundation and Susan G. Komen, says such scams can give patients “a false hope.”

“For anyone ... just [thinking], ‘OK, I’m tired of going to a regular doctor, let me try this,’ it’s very bad. The way the emails are written, like it’s personally to you, is very suspect. … Somebody else [may be] like, ‘Hey, this person really knows me, they know about my case, they could probably really help me.’”

“It’s scary,” Scott says, “that there’s somebody out there actually doing stuff like this.”

Feature

Some patients are forced to deal with “infuriating” attempts at exploitation while navigating their disease. 

Scammers Targeting Patients With Cancer

For more than seven years, 58-year- old Cindy Brown of Trabuco Canyon, California, had tried numerous therapies for multiple myeloma, but her disease had always relapsed.

Then, in March 2020, her oncologist at the City of Hope Comprehensive Cancer Center in Los Angeles asked her to consider joining a clinical trial evaluating Tecvayli (teclistamab-cqyv), an immunotherapy drug that is a human bispecific monoclonal antibody, or bispecific T-cell engager, a highly specialized molecule that, by binding to two different proteins, focuses the immune system on two distinct targets to attack the cancer. 

 by binding to both a receptor called CD3 on the surface of T cells and a protein expressed specifically on multiple myeloma cells called the B-cell maturation antigen (BCMA). Brown has been in remission since she started taking the drug.

Bispecific antibodies are a type of immunotherapy designed to bring two cells or proteins on a cell together, since proximity helps initiate the immune cascade. Using therapies that specifically recognize a target signal such as myeloma-specific BCMA and act only on those cells “is a much more specific way of targeting the bad cells we’re trying to get rid of, as opposed to therapy that can attack a lot of different types of cells and then cause side effects,” says Dr. Nisha Joseph, an oncologist at Emory Winship Cancer Institute and an assistant professor of hematology and medical oncology at Emory University School of Medicine in Atlanta. “It’s almost like a homing device.”

Only a few such therapies have been approved by the Food and Drug Administration (FDA), generally as fourth-line therapy after other treatments have not worked, and more are in clinical trials. However, study results have been impressive, according to Dr. Krina Patel.

“Heavily pretreated patients who otherwise would have probably not done very well, and [with whom] we would have discussed hospice, are now living longer using these therapies,” says Patel, an associate professor in the department of lymphoma and myeloma at The University of Texas MD Anderson Cancer Center in Houston. “We’re improving overall survival [the time a patient lives following treatment] with these therapies, which is pretty phenomenal.”

Over the past decade, the FDA has approved treatments for multiple myeloma that have had a response rate (patients whose disease responded partially or completely to treatment) varying between 23% and 30%, adds Dr. Joshua Richter, director of multiple myeloma at the Blavatnik Family Chelsea Medical Center at Mount Sinai and an associate professor of medicine at the Tisch Cancer Institute in New York.

“Now you look at these drugs being used, and the bispecifics are getting 60% to 80% response rates, and some CAR-T (chimeric antigen receptor-T cell therapy treatments) are pushing 90% to 100%. It’s a whole different ballgame,” Richter says.

Take Brown’s case: She first received a diagnosis of multiple myeloma at age 48 after having debilitating leg and hip pain for months. She underwent a chemotherapy regimen of Revlimid (lenalidomide), Velcade (bortezomib) and dexamethasone.

During a three-week break from treatment leading into a planned stem cell transplant, Brown had a nearly complete relapse and had to be admitted to the hospital for three rounds of another seven-drug regimen. At that point, doctors recommended she undergo an allogeneic and autologous stem cell transplant. She had her own bone marrow cells collected and returned to her and also received cells from a donor. The donor cell transplant sent her into heart failure a month later, and she almost died. Finally, she recovered and was in remission for two years.

Brown tried three other therapies before needing radiation treatments because the cancer wasn’t responding. After a short remission, the cancer returned in her arm. As a result, Brown needed surgery to implant a rod from her elbow to her shoulder.

Through the clinical trial, Brown initially received injections of Tecvayli every week for a year, then every other week. She is now receiving injections every four weeks.

“I have not had a detectable cancer marker since I started,” she says.

The FDA approved Tecvayli in 2022 as the first bispecific antibody for use in multiple myeloma.

, a BCMA-CD3-directed bispecific antibody immunotherapy, was approved by the FDA in August 2023 to treat adults with relapsed or refractory multiple myeloma who previously received four or more lines of therapy.

The approval was based on findings from the phase 2 MagnetisMM-3 trial. Among patients who had received four or more prior lines of therapy, the overall response rate (ORR, percentage of patients with complete or partial response to therapy) was 58%, with an estimated 82% of patients maintaining that response for at least nine months.

Among patients whose prior treatment included a BCMA-directed therapy, the ORR was 33%, and 84% of these patients maintained their response to treatment for at least nine months, according to the study findings.

Other anti-BCMA therapies being used for multiple myeloma include the following:

 ADCs contain an antibody that targets BCMA, a chemotherapy agent and a protein that links them together. They work by attaching to cancer cells and delivering chemotherapy directly to those cells. Blenrep (belantamab mafodotin) has been approved by the FDA; it is administered as an intravenous infusion.

: With this option, immune system T cells first are removed from a patient’s blood, and then they are genetically engineered in a commercial laboratory to express a receptor that binds to BCMA. Millions of these CAR-T cells are grown in the laboratory and then infused back into the patient, where they populate the marrow and can stay in the circulation long term, seeking out and destroying cancer cells. CAR-T cell therapy is a one-time therapy, whereas the others require treatments every one to three weeks.

Two therapies approved by the FDA for the treatment of multiple myeloma, 

, are among the CAR-T cell therapies that the agency has requested come with a warning following reports of T-cell malignancies, including CAR-T positive lymphoma, among patients who had been treated with that class of drug, it was reported in January.

Trena Robertson, 51, of Baton Rouge, Louisiana, also has achieved lasting remission with a BCMA- targeted treatment — in her case, CAR-T cell therapy.

Robertson received a diagnosis of multiple myeloma in 2018 after experiencing body pain and having malignant plasma (antibody-producing) cells in more than 90% of her bone marrow.

She first underwent chemotherapy treatments recommended by a local oncologist and then a stem cell transplant at The University of Texas MD Anderson Cancer Center.

She was doing well but started relapsing six months later. By then, Patel, her oncologist, recommended that Robertson enroll in a clinical trial for CAR-T cell therapy as her second line of treatment.

In 2019, Robertson relocated to Houston to start the protocol. She received some injections and had to undergo three rounds of advanced chemotherapy. She made it through the first two rounds but was sick with a fever the first day of the third round. Instead, she ended up in the emergency department in need of a blood transfusion, which meant she had to restart the protocol and chemotherapy a month later.

Later that year, Robertson received treatment with CAR-T cell therapy. She returned home and eventually went back to work as a clinical coordinator for a speech pathology and audiology program at Southern University.

“They told me before the treatment that it was supposed to last anywhere from 18 to 24 months,” she says. “This month makes 47 months that I’ve been in remission. ... I’ve been doing very well.”

Selecting the appropriate treatment for each patient depends partly on availability and access, according to oncologists. Because CAR-T treatment regimens are made specifically for each patient and only two therapies are approved for multiple myeloma, there are limited slots available, and the products take several weeks to manufacture. Patients who are frail or can’t tolerate some of the side effects of bispecifics may be better candidates for ADCs, Patel says.

The side effects of CAR-T cell therapy and bispecifics include cytokine release syndrome (signs of systemic inflammation such as fever, chills and drops in oxygen or blood pressure), which is likely associated with the activation of T cells, says Dr. David Avigan, director of the Beth Israel Deaconess Medical Center Cancer Center and a professor of medicine at Harvard Medical School in Boston.

Other reactions include neurotoxicity, which can cause seizures but usually responds to steroids, or a temporary suppression of blood counts, which can increase the risk of infection. Blenrep, the ADC, can cause ocular side effects such as blurred vision or dry eyes. 

Some patients have expressed fear over the ocular side effects, Joseph says, but they shouldn’t. Studies have shown that with treatment these side effects completely resolve in nearly all patients. Symptoms vary and can be mild.

“Patients can tolerate this drug and have quality of life. That’s important because sometimes I feel like I have to convince someone to take it, where the other option is hospice care,” Joseph says.

When Brown started the trial, she spent just under two weeks in the hospital with cytokine release syndrome and says she had increased pain in the areas of her body that had active myeloma at the time.


“But after probably four treatments, I didn’t get that anymore,” she says. “Occasionally at the injection site, I get a little rash that itches for a couple of days. But that’s sort of sporadic. It’s very well tolerated. ... I get the shot and I leave.”

She receives monthly infusions of intravenous immunoglobulin proteins to help fight infections, has laboratory tests every two weeks and has a PET scan every three months. She has some mild symptoms akin to an upper respiratory infection and says she feels a little tired but overall is doing well.

Robertson experienced a fever within the first 24 hours of receiving her CAR-T cell therapy. “They said that was good because it meant the treatment was doing what it was supposed to be doing,” she says.

She has since been monitored with blood and urine testing, as well as periodic PET scans and bone marrow biopsies.

Some questions remain about the use of anti-BCMA therapies. Could the therapies be used earlier on? Can these therapies be administered one after the other if needed, such as giving a bispecific after CAR-T cell therapy? The predominant thought is that T cells could be exhausted after their first round of therapy, but data published by Richter’s group demonstrated that may not be the case. Some patients who received CAR-T cell therapy or a bispecific, and then received another T-cell engager as their next line of therapy, did better than patients who received other types of therapies as the next line.

“It turns out you can reinvigorate and reactivate those T cells sequentially,” Richter says.

Other concerns are whether myeloma cells will adapt and shut off the expression of BCMA to evade therapy, as well as how best to manage infections and alert doctors regarding symptoms to watch.

Much of the science is focused on trying to understand the mechanisms of resistance and how to get around them, Avigan says, as well as how to prevent cells such as CAR-T cells from being rejected. Similar to how oncologists initially used chemotherapy to simultaneously give different drugs that work in different ways, combination immunotherapies may emerge to help avoid pathways of resistance by targeting different pieces of the immune system, Avigan says.

And so, research continues. Other promising agents in the pipeline include the bispecific antibodies linvoseltamab, which is being developed by Regeneron, and ABBV- 383, which is being developed by AbbVie, Patel says.

For now, oncologists are focusing on BCMA as the primary target, but there are others being studied, such as G-protein coupled receptor family
C group 5 member D (GPRC5D) and Fc receptor-like protein 5 (FcRH5).

“[With] the more knowledge we accrue, is there a magic combination we can use to start curing [patients] on a regular basis? I’m hopeful we can,” Richter says.

The BCMA protein has become the primary target for treating multiple myeloma, resulting in longer survival and more manageable side effects.

Spring 2024 | CURE

How to Talk to a Care Team About Post-Mastectomy Chest Numbness

Patients With Cancer Facing Fraud and Exploitation

The Impact of Immunotherapy on Multiple Myeloma

Taking Control of Diet May Improve Outcomes for Multiple Myeloma

Scammers Targeting Patients With Cancer

A 'Whole Different Ballgame' for Myeloma Treatment

Latest News