Living With Multiple Myeloma: Empowering Patients to Navigate This Challenging Disease
Take a deep dive into best practices for helping patients understand and manage a diagnosis of multiple myeloma. Two advanced practitioner experts in this field— Amy Pierre, NP, of Memorial Sloan Kettering Cancer Center, and Angela Vickroy, ANP-BC, of Barnes-Jewish Hospital, Washington University School of Medicine—detail their approaches for helping patients maintain bone health, prevent infection, and navigate their care in the new COVID-19 world.
Meet the faculty
Memorial Sloan Kettering Cancer Center
Ms. Pierre is a nurse practitioner in the Multiple Myeloma & Lymphoma Division at Memorial Sloan Kettering Cancer Center. She has coauthored several publications and delivered presentations on multiple myeloma at numerous conferences.
Barnes-Jewish Hospital, Washington University School of Medicine
Ms. Vickroy is a nurse practitioner in Outpatient BMT, Leukemia & Lymphoma in the Division of Oncology at Barnes-Jewish Hospital. Her primary focus is on the care of patients with multiple myeloma. She is also involved in clinical research trials on treatments, stem cell transplant, and banking protocols.
What are some of the things you do to help your patients with multiple myeloma understand their disease?
I find that education is the most important thing we can give our patients, especially upon initial diagnosis. They are given so much information, and yet so much of that is not captured, especially during their initial visit. When I see a patient after the physician, I can really go through and discuss the disease itself and our treatment landscape. I often compare myeloma to a chronic illness that patients will be treating for the rest of their lives. Multiple myeloma may not be curable, but it is definitely treatable.
I also like to give patients control wherever I can. Cancer can make patients feel out of control because they have done nothing wrong to get this disease. Educating my patients about their disease, including treatment options, disease measurements, and how myeloma may affect them, allows them to take some control over the process. If a patient sees that their myeloma labs are dropping due to treatment, they feel that what they're doing is worth it, and I find that to be so beneficial. To know that what they're going through, and the struggles that they're facing, are producing an effect on their cancer can significantly help the patient’s morale.
In addition to education, some of the best advice I give my patients is that anyone diagnosed with myeloma should be sent early and up front to a myeloma specialist. There was a clinical trial that looked at patients who were seen by a myeloma specialist versus not, and there was an overall survival advantage for those patients who saw a specialist.1
I also think that each patient should have an advocate—someone who is willing and able to be their sounding board and ask good questions to their providers.
Knowledge is power, right? I also explain to patients that this is a chronic illness, characterized by multiple phases of remission and relapse, so they need to understand that they will be on chronic therapy. I stress that it’s best to stay on therapy because studies have shown myeloma patients who remain on therapy live longer. I also tell my patients it's important to understand their risk stratification and their inherently compromised immune system.
What’s new with venous thromboembolism (VTE) prophylaxis and calculating risk?
The NCCN guidelines about VTE prophylaxis recommend using aspirin in low risk disease, and low molecular weight heparin in high-risk disease. But there are more tools that we can use specifically for the myeloma population, particularly the IMPEDE risk assessment model, which was published last year.2 It was looking at retrospective data and applying different weighting to patient-specific risk factors with myeloma. It's characterized into three risk groups: low risk, intermediate risk, and high risk. Using the IMPEDE model is a quick, easy way to figure out a patient's risk score specifically for myeloma.
There's also the SAVED score.3 That risk assessment model has been validated as well. This is specifically for myeloma patients who are receiving immunomodulatory drugs. It has two categories: low risk or high risk. Really easy to calculate. These VTE risk assessment tools are becoming more specific for our patient population and are definitely getting easier to use in everyday practice.
Outside of aspirin and low-molecular-weight heparin, we've also been looking at the direct oral anticoagulants (DOACs). There was a single-center, retrospective trial looking at newly diagnosed myeloma patients who received VRd with aspirin prophylaxis, versus KRd with aspirin prophylaxis, versus KRd with a low-dose DOAC.4 It demonstrated that patients who had aspirin prophylaxis with KRd were more likely to experience a VTE. And not only that, it happened earlier than for patients who received aspirin prophylaxis with VRd. And they also saw that the rate of a VTE on KRd with a low-dose DOAC was reduced to the same level as for those on aspirin prophylaxis with VRd and without any increased bleeding risk. The take-home message from this study is that the primary prevention of aspirin with a carfilzomib-based regimen, particularly KRd, may not be sufficient to prevent a VTE. In fact, this study changed our clinical practice. We now prescribe a low-dose DOAC for VTE prophylaxis for our patients who are receiving KRd.
Switching gears, what are some of the differences between using zoledronic acid and denosumab in maintaining bone health for our myeloma patients?
Denosumab being recently approved in this setting is very encouraging, especially for our patients with renal impairment. We are currently using denosumab in those patients who have renal impairment, whereas for a patient who does not have renal impairment, we are using zoledronic acid.
How are you treating your patients, Amy?
We give bisphosphonates or denosumab monthly up until transplant, and then transition to every 3 months after that. We do limit the usage of these drugs to about 2 years.
There is about a 1% higher rate of osteonecrosis of the jaw (ONJ) with denosumab versus zoledronic acid. There is also a concern that when you discontinue denosumab, you have an increased risk of vertebral fracture. If you are stopping denosumab, it’s best to provide a dose of a bisphosphonate to maintain the bone mineral density that rapidly decreases once you stop the denosumab; this will help prevent the rebound fractures that can occur.
The trial that led to the approval of denosumab5 didn't show any significant difference in prolonging the time to a skeletal-related event, but denosumab was associated with a superior progression-free survival rate compared to zoledronic acid, and that's thought directly to be related to its RANK ligand inhibition.
What’s the latest on infection prevention for multiple myeloma?
We know that patients with multiple myeloma are at an inherent increased risk of infections, particularly with encapsulated bacteria but also herpes zoster infections. We do need to provide prophylaxis with antivirals for patients who are on high-dose steroids, elotuzumab, and daratumumab and had recent stem cell transplant. If patients are on high-dose dexamethasone, we also have to consider PJP prophylaxis and anti-fungal prophylaxis. And for patients who are getting daratumumab therapy, we do need to conduct baseline testing for hepatitis B, as daratumumab can cause viral reactivation for hepatitis B.
There are data demonstrating the use of prophylactic antibiotics with fluoroquinolones in myeloma for newly diagnosed patients.6 That study gave levofloxacin for 12 weeks for newly diagnosed patients, and they saw less severe bacterial infections, less febrile episodes, and less mortality. We haven't really necessarily adopted that strategy for everyone; I think it should be considered on a case-by-case scenario.
We also tell our patients to make sure they're obtaining their seasonal influenza vaccines. They do have a higher rate of invasive pneumococcal disease as well so they should be getting their pneumonia vaccinations too.
And in terms of the herpes zoster vaccine, we explain to our myeloma patients they shouldn't be receiving live vaccines, but there is a shingles vaccine that's now available that is inactivated. We do not use that vaccine as a replacement for HSV prophylaxis, but we do allow our patients who are in remission to obtain the inactivated shingles vaccine.
We just added the shingles vaccine to our post-transplant re-vaccination schedule. And so our patients are receiving it at the 3-month point, and then the second dose following as per standard. But similarly, we are not changing their HSV prophylaxis. They will still remain on antivirals despite the shingles vaccine. And part of that is because the side effects of shingles can be truly detrimental to our patients.
We actually do not use PJP prophylaxis for our patients who are post-transplant or on high-dose steroids. But I know that many institutions do. And we currently are not using levofloxacin up front based on that study, because I feel there needs to be a little more research to back its use across the board for our patients.
We are starting to implement a lot more intravenous immunoglobulin (IVIg) in our patients. We know that hypogammaglobulinemia is very common in these patients, so they do not have the normal immune response that those without a low IgG have. We have started IVIg, especially in those patients who have had frequent hospitalizations or significant infections—especially around the winter months to try to prevent severe hospitalizations and infections.
How do you discuss COVID-19 with your patients, and what are some of the precautions that patients with multiple myeloma need to take to minimize their risk?
We are getting questions about COVID-19 precautions thrown at us all the time, and I think the hardest part is that we really don't know. What I’m discussing with my patients is that they should be as careful as they can be. We know that patients who have pre-existing conditions are at higher risk for complications from COVID-19, and many of our multiple myeloma patients are post-transplant or currently receiving treatment, but they also have a disease that places them at increased risk for infection to begin with.
I recommend to patients that they be “COVID conscious.” Everyone should be wearing a mask. If they are meeting in groups, it needs to be outdoors. They should avoid in-person work if possible. We are also trying to limit exposure by doing telehealth visits when able.
In the initial phases of the pandemic, we tried to prolong the time between visits, especially for those patients on active monitoring or who are not currently on treatment. I think that anything that we can do to limit our patients' risk is the most important, and they should be doing the same for themselves, if possible.
The COVID-19 mortality rate among myeloma patients who were admitted to the hospital was about 29%, which is a much higher rate compared with the general population, which is between 0.5% and 3%.7 So our myeloma patients really are at risk, and they need to understand, like you said, the inherent risks due to their disease, as well as understand that they need to protect themselves as best as possible.
What other supportive care pearls or other ideas you would like to share with patients?
I think joining a support group can really be helpful to see other myeloma patients who have had a similar journey, and even myeloma patients who've had myeloma for a long time can help you understand what are the most appropriate questions to ask and help you to be the best advocate for yourself during the journey of your disease.
- Go RS, Bartley AC, Crowson CS, et al. Association between treatment facility volume and mortality of patients with multiple myeloma. J Clin Oncol. 2017;35:598-604.
- Sanfilippo KM, Luo S, Wang T-F, et al. Predicting venous thromboembolism in multiple myeloma: development and validation of the IMPEDE VTE score. Am J Hematol. 2019;94:1176-1184.
- Li A, Wu Q, Luo S, et al. Derivation and validation of a risk assessment model for immunomodulatory drug-associated thrombosis among patients with multiple myeloma. J Natl Compr Canc Netw. 2019;17:840-847.
- Piedra KM, Hassoun H, Buie LW, et al. VTE rates and safety analysis of newly diagnosed multiple myeloma patients receiving carfilzomib-lenalidomide-dexamethasone (KRD) with or without rivaroxaban prophylaxis. Blood2019;134(Suppl_1): 1835.
- Raje N, Terpos E, Willenbacher W, et al. Denosumab versus zoledronic acid in bone disease treatment of newly diagnosed multiple myeloma: An international, double-blind, double-dummy, randomised, controlled, phase 3 study. Lancet Oncol. 2018;19:370-381.
- Drayson MT, Bowcock S, Planche T, et al. Levofloxacin prophylaxis in patients with newly diagnosed myeloma (TEAMM): A multicentre, double-blind, placebo-controlled, randomised, phase 3 trial. Lancet Oncol. 2019;20:1760-1772.
- Hultcrantz M, Richter J, Rosenbaum CA, et al. COVID-19 infections and clinical outcomes in patients with multiple myeloma in New York City: A cohort study from five academic centers. Blood Cancer Discov. 2020;1:1-10.