Patients with multiple myeloma who have secondary immunodeficiencies (occurs when the immune system is compromised because of an external or acquired factor, such as cancer treatment) are more likely to experience infections during their diagnosis than those without. 

This results in lower overall survival rates and quality of life, according to a recent study.

Dr. Joshua Richter, lead author on the study, explained that the main focus in treatment is on efficacy. However, it is important to focus on how patients will react to certain drugs, because multiple myeloma is a cancer of the immune system and some treatments can hurt the immune system even more.

“As our treatments get better and better, we’re trying to figure out who is at risk for immune suppression, bad infections or having hospitalizations for those infections,” Richter, an associate professor of medicine at the Tisch Cancer Institute in the division of hematology and medical oncology at Mount Sinai in New York City, said in an interview with 

The study, which was presented at the European Society for Medical Oncology Congress 2022, included 4,638 patients with multiple myeloma. Patients with secondary immunodeficiencies (870 patients) had a shorter duration of multiple myeloma and were more likely to have cytopenia (low number of blood cells) or a severe bacterial infection at the start of the study compared with those without.

During the 12-month follow up, the mean number of infections per patient was significantly higher in patients with secondary immunodeficiencies (7.1 infections) compared with those without (4.6 infections). Patients with secondary immunodeficiencies were significantly more likely to contract at least one infection of any kind (58.9%) or one severe bacterial infection (31.7%) than those without (32.1% and 13.5%, respectively).

Because of these infections, patients with secondary immunodeficiencies were more likely to receive anti-infectives during follow-up compared with those without (92.5% versus 58.3%). Those with secondary immunodeficiencies were also more likely to be hospitalized (26.6%) because of infection compared with those without (9.3%).

Richter explained that a patient’s treatment for multiple myeloma can be affected because of their risk of infection. Some patients may become so sick that they will have to stop cancer treatment, as they can no longer take a therapy that will further suppress their immune system.

“We (often) have to sit there (and) play this horrible game of chicken, in which over time, the disease is getting worse, but (the patient) is healing from an infection,” he explained. “But we’re also trying to find the amount of time where we think it’s safe enough to introduce therapy.”

Of note, overall survival (time from diagnosis or treatment start when patients are alive) at 24 months was lower for patients with secondary immunodeficiencies (74.9%) compared with those without (81.8%).

“It’s basically an increased morbidity that we see, not just mortality,” Richter said. “The patients have to go through more in their journey, and we’re trying to figure out how to minimize that.”

The risk of infection can affect not only the course of treatment but also a patient’s quality of life. The idea of being in a limbo can become a problem for patients mentally, as their cancer is getting worse, but they also have to fight off an infection caused by the treatment. “This takes a huge toll (on patients),
that their disease may not optimally be controlled,” he noted.

The lasting effects from infection can also have an impact on quality of life, Richter added. “Even if a patient does get over an infection ... they can have a cough or feel run-down for months or longer,” he said.

Patients can’t do much to prevent their individual risk of infection, Richter explained, but what they can do is be open with their care team about anything they may be experiencing — small or large. 

“The biggest thing is to be open with their care team about everything, so that (they) can get a better assessment of how it’s impacting (them),” he said.

Patients should be reporting even common colds they experience to their care team. Richter explained that he doesn’t hear enough about those common colds from his patients, so he doesn’t know to give someone something to prevent them or something bigger that comes from it.

“I always say you don’t get extra points for suffering,” he concluded. “I’d rather (a patient) tell me 10 things that mean nothing than keep one thing that meant something. That’s (often) the tipping point. They had three or four infections that were little, let’s give them something to prevent the big one.”

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Articles

Some patients are at higher risk of infection, so it’s critical that they keep their care team up to date on any symptoms.

Dealing With Infections in the Myeloma Setting Can Be 'A Horrible Game of Chicken'

As treatments continue to advance in the multiple myeloma space and patients are living longer, it is important that they have resources and support around them — something that was lacking 20 years ago.

Karen DeMairo has been at The Leukemia & Lymphoa Society for 23 years and has witnessed firsthand the advancements of many myeloma support groups. DeMairo, who is the vice president of education, support and integration at the organization, said when she started, she didn’t fully understand what multiple myeloma was — just as many people didn’t. 

“I don’t think a lot of people really knew what myeloma was (20 years ago),” she said in an interview with 

®. “People are still learning what it is, so I don’t think there was as much emphasis on providing support as (there is) now.”

Twenty years ago, there was a lack of awareness around multiple myeloma, so it was a struggle for those patients to find support, DeMairo explained. 

“And ... if you don’t know about it, how can you provide support?” she explained. “And then the support that may have been available, people weren’t looking for it, which I think has now changed.”

Jennifer Flowers, a community outreach volunteer at The Leukemia and Lymphoma Society, who is currently in remission from multiple myeloma, agreed and noted it probably wasn’t as easy for those patients to find 

“Finding support for patients with multiple myeloma 20 years ago was very different than what it is today,” she said in an interview with 

®. “I’d imagine back then it was quite different than it is now because there are so many options and tools that are available to accommodate one’s personal needs during their journey.”

Furthermore, education was lacking, so support was hard to come by for patients with multiple myeloma. There was also a limited number of support groups for these patients to join. But today, as treatments for the space have advanced, so have the support groups and resources for patients.

Flowers is one such patient who has benefited from the advances of support groups. She received her diagnosis in 2008 without knowing what multiple myeloma even was, let alone the treatment, side effects and effect on quality of life it would entail. An aspect she found comforting when joining the organization during her cancer journey was hearing from others and gaining a better understanding of what to expect.

“Patients like me benefit from support groups by connecting with peers who have traveled their journey and openly share their experience,” she explained. “It’s very helpful and important. Once (you’re) enlightened about the journey you’re embarking on, you don’t feel so blindsided.”

Support groups can also provide patients with educational resources, financial advice, side effect support and much more, which ultimately led to an improved quality of life for Flowers. 

“Advances in support groups are important for me because they elevated my awareness about the disease and tools available to aid and receive the best care and support to live a quality life,” she said.

DeMairo agreed and added that as treatments continue to advance, so will the resources, education and support that are available for patients. 

“It’s important for (a patient’s) health that they know these treatments are available,” she noted. “We’re seeing more and more progress in treating patients with multiple myeloma. And it’s important that as they survive the treatments and the disease, we help provide those resources to improve their quality of life.”

Both DeMairo and Flowers noted that although awareness around the disease is greater than it was two decades ago, more is needed — specifically in minority and underserved communities. 

“(Although) we continue to work toward educating others about the disease, there is an inconsistent lack of knowledge about the disease being spread in different communi- ties (because of) our social economic background in the area we live in,” Flowers said.

Of note, Black Americans are twice as likely to receive a multiple myeloma diagnosis as individuals of another race. “We are not equipped with information to provide support and the best possible tools and care we need to navigate the process,” she said. DeMairo explained that The Leukemia and Lymphoma Society has been doing its part to help combat the disparities in multiple myeloma care with their program, Myeloma Link. The goal is to increase access to education on and treatments of multiple myeloma to empower Black patients with multiple myeloma, caregivers, survivors and family members.

“In terms of support, we, as an organizaion, must try to reach communities that are most at risk,” DeMairo noted. “And people in general, to make them more aware of the disease and the resources available to them.”

Although there is more work to be done, what has been done so far has benefited many, including Flowers. She said joining a support group gave her a sense of hope, and she feels grateful to be helping those who are now in a position she once was in. 

“For me, to make a difference, you have to be the difference,” she concluded. “With that, you give (patients) hope and help in providing the necessary steps they need to take so they can get the best quality care they possibly can.”

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The past 20 years have brought great advances to advocacy groups, helping to improve patients’ quality of life. But more work is needed to raise awareness in underserved groups.

Myeloma Advancements Are a Work in Progress

Caregivers for patients with multiple myeloma may experience high levels of stress and anxiety as a result of forgetting to care for themselves during the cancer journey, according to recent study results.

"The reason we did this work is that there is a lack of research into what the caregiver experience is like in multiple myeloma,” Dr. Elizabeth O’Donnell, lead study author and assistant professor at the Dana-Farber Cancer Institute in Boston, said in an interview with 

®. “Multiple myeloma is an incurable blood cancer … and most patients are treated for, on average, seven-and-a-half years or more. But as a result, the burden of being treated for myeloma can be quite significant both for patients and caregivers.” 

The study, which was published in the journal

, included 127 caregivers for patients with multiple myeloma. The rates of clinically significant anxiety, depression and post-traumatic stress disorder were 44.1%, 15.8% and 24.4%, respectively.

Compared with patients with multiple myeloma, caregivers reported higher rates of clinically significant anxiety (22.5% versus 44.4%). 

“These results mean having a loved one who has a diagnosis of multiple myeloma and is going through therapy does impact the caregiver’s quality of life and emotional well-being,” O’Donnell noted. 

This is true for Marsha Calloway-Campbell, from Cincinnati, who has been a caregiver for her husband since he received his diagnosis of multiple myeloma in January 2017. While her husband was in the hospital during diagnosis and treatment, she rarely left his side, which significantly affected her quality of life. 

“As the caregiver, the diagnosis was devastating,” she said in an interview with 

®. “I had to think in a moment, ‘OK, I’m his caregiver (and) his advocate, (so) I need to stay in this hospital every second.’ That was the pressure I put on myself.”

Calloway-Campbell was worried she couldn’t walk out of the hospital room because a doctor may come in to give them news; she knew nothing about the disease and didn’t want to miss a moment. Like many other caregivers, she also had to worry about finances and telling their daughters, but eventually she was able to cross that off the list. What she did do every day during a monthlong stay in the hospital was cry. But eventually, she crossed that off the list too. 

“I would cry daily for him,” she recalled. “But I had to stop crying at some point. In my mind, there was a lot of self-talk: ‘Marsha, you’re sitting here crying, (and) that’s not helping anything.’”

She began to use her experience as a lawyer to help her through, and she would think of her husband as a client. When her clients came to her with an issue, she didn't cry for them. 

“For me to get through, I had to put myself on survival mode and act as a lawyer so I wasn’t falling apart every time somebody said something to me about his disease,” she said.

Although Calloway-Campbell had a hard time understanding the diagnosis, she knew what it would take and what the prognosis entailed. She understood it was an incurable disease because a friend of hers, who is her primary care physician, explained it to her before the diagnosis was definitive. 

“She was able to give me some information at the time, and I remember her saying to me, ‘It’s incurable, but it’s treatable,’” Calloway-Campbell said.

However, not all caregivers can accept the prognosis. Although most caregivers (84.2%) reported that the oncologist informed them the patient’s cancer was incurable, only 50.9% acknowledged it was terminal and 53.6% acknowledged it was incurable.

O’Donnell explained that there can be a variety of reasons that caregivers do not fully grasp the prognosis of their patient. For one, it could be an issue of terminology — “terminal” and “incurable” may have different meanings to some. Another reason could be that caregivers do not want to accept the prognosis because they still hope. 

“There is always just hope,” she explained. “Is it a question of by owning it or saying it, are they somehow extinguishing their own hope? I think we need to better understand that piece of prognostic understanding and what that word means to (individuals) when we ask it.”

O’Donnell explained that these results highlight the need for caregivers to pay attention to themselves and take care of what they need so they can better take care of the patient. 

“It is often said that myeloma is a marathon not a sprint, so pacing oneself is a good place to start (for caregivers),” she said. “There are so many (individuals) who mean well and want to give to their loved one, but you have to have something for yourself in order to give it to someone else.”

However, it can be hard for some caregivers, like Calloway-Campbell, to begin caring for themselves. 

“I struggle. I struggle with the ‘for me part,’ honestly I do,” she said. She explained that when her husband first came home from the hospital, he couldn’t walk and he needed help to eat, and she was responsible for tracking everything, including his medications and vitals. There was no time for herself. As a result, she forewent self care and lost 27 pounds in four to five weeks. 

Although she still struggles, she tries to remember to do things for herself, as her husband, who is doing better now, and daughters have encouraged her to do. She serves as the director of the Black Myeloma Health Initiative at the HealthTree Foundation, which has been like therapy to her. 

“What I do for me is hold on to my faith. I stay in prayer. And my work — I love my work,” she concluded. “People don’t understand it, they (tell) me I have to get away from it, but my work does help me get through. … I try to just focus on the task at hand.”

It is important that caregivers take care of not only the patient, but also themselves, as the diagnosis may affect their mental health. 

Multiple Myeloma Special Issue 2 | CURE

Dealing With Infections in the Myeloma Setting Can Be 'A Horrible Game of Chicken'

Myeloma Advancements Are a Work in Progress

Caring for the Myeloma Caregiver

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