What Should Supportive Care Entail in Relapsed/Refractory Multiple Myeloma?

For patients undergoing treatment for relapsed/refractory multiple myeloma, challenges encompass the physical consequences of adverse effects (AEs) as well as different emotional hurdles. Developing a comprehensive supportive plan that addresses both treatment-related concerns and practical, psychosocial impacts consequently becomes a critical component of care.

In a From All Angles program hosted by CancerNetwork^®, Samantha Shenoy, NP, MS, MSN, ACNP-BC, who works in the Hematology and Cellular Therapy programs at University of California, San Francisco (UCSF) Health, and Isabel Curtin, LCSW, of UCSF Health, spoke with Elizabeth Bohannon, of Co.lab Coaching & Consulting in Sausalito, CA, about navigating her relapsed/refractory multiple myeloma treatment journey. Following an overview of Bohannon’s diagnosis, the group shared insights for building effective supportive care plans that mitigate both physical and emotional challenges for patients. Based on her experiences with multiple myeloma, Bohannon emphasized developing a sense of self-advocacy while forming a comprehensive network of loved ones, social workers, nurse practitioners, therapists, and other experts to help oneself throughout treatment.

Diagnosis

Shenoy: Elizabeth, can you take us back to when you were first diagnosed with multiple myeloma? What symptoms led you to seek medical attention, and what do you remember most about receiving that diagnosis?

Bohannon: Back in 2020, probably in the fall and winter of that year, I had just left my career practicing law, and I was filling my time going back to school to learn how to be an executive coach. I was riding horses again for the first time in 40 years. The horse I had was very big, and so I kept getting what I thought were intercostal muscle pulls. I felt like I was pulling the muscles inside my ribs, so I was sore a lot, to the extent that my husband was asking, "Are you sure this horse is the right one for you?"

Then, my back started to hurt, and I was noticing more and more this sore back; sitting for long periods of time was painful. But I was a woman in my 50s and postmenopausal. I thought this is what an aging body feels like. Then, in 2021, I decided to go see a chiropractor because I thought maybe an adjustment was needed. He took x-rays before starting to do adjustments, and he called me up right away and said, "Have you ever heard of multiple myeloma? You have the classic three holes. They look like three-hole-punch holes in your bones."

I had been an oncology nurse many moons ago, and I knew multiple myeloma well. Back when I was a nurse, it was a death sentence. It was early February 2021, and time stood still. I pretty much went into shock. Then, I got a biopsy pretty quickly, and it confirmed the diagnosis. It was pretty hard. Anybody who’s been diagnosed with anything serious knows that feeling of the bottom dropping out, time standing still, and wondering if you’re going to survive.

Shenoy: Thank you for sharing that. Isabel, from your perspective as a licensed clinical social worker, what emotional and practical challenges do patients and families commonly experience as they navigate relapsed or refractory multiple myeloma and multiple lines of therapy?

Curtin: Speaking to what Elizabeth shared, getting a diagnosis like multiple myeloma can be incredibly earth-shattering. From an emotional perspective, patients often deal with a great deal of anxiety, frustration, and disappointment. Navigating relapsed or refractory multiple myeloma can be challenging in terms of how to talk to friends and family, especially for loved ones who aren’t familiar with that diagnosis. It can also cause additional stressors around how one might respond to new treatment and what additional treatment options exist, as well as logistical challenges, such as taking time off work and changes in plans like vacations or seeing loved ones.

Psychosocial and Practical Considerations

Shenoy: On your experiences from both the patient and psychosocial care perspectives, what advice would you give patients and families about proactively communicating treatment-related concerns and seeking supportive care resources throughout the multiple myeloma journey?

Curtin: I can start us off. I strongly feel there should be no questions that are off-limits for you to share with your healthcare team. I often tell patients and families there are no dumb questions. We’re here to provide support to you and to your families and loved ones; that’s our job. If you’re having a thought or concern that you want us to weigh in on, chances are that we’ve heard it before, and we’ll be able to address your question quickly. Many cancer clinics do have an assigned social worker. If you’re looking for specific resources in your area or for your diagnosis, it can always help to ask your doctor to place a referral to the social worker, as that person likely has knowledge about what is available both through your healthcare provider’s office as well as more widely in the community.

Bohannon: I completely agree with that, and I would just add that getting support from other people living with multiple myeloma is helpful, with this big caveat. I joined a lot of online groups in the beginning; there’s a Facebook group for people with multiple myeloma, and there are some other groups. I would caution people to be careful about those places because you might have hundreds or thousands of people weighing in there, and it can be terrifying. There are all different levels of sophistication and understanding of healthcare terminology, and multiple myeloma is complicated. I would be careful about how you engage in those really big groups. For me, I found it overwhelming and terrifying.

Then, the more I came to understand my disease, I found it frustrating because a lot of the information you get from those forums is just wrong. Rely on your team and build partnership with the folks you work with. My practice nurse, Katerina, and I are quite good friends at this point, but we built that friendship by being honest with each other, and I leaned on my healthcare team quite a bit.

Building Support and Developing Self-Advocacy

Shenoy: Isabel, living well with relapsed/refractory multiple myeloma extends far beyond the medical treatment. From your perspective, what psychosocial, financial, or practical challenges do patients and families most commonly encounter as they navigate this disease over time?

Curtin: I think Elizabeth put this well earlier. I’ve had many patients describe it being really challenging to continuously update friends and family about where they’re at in treatment, especially given that with refractory or relapsed multiple myeloma, there can be many different phases of treatment. Additionally, it can impact individuals’ careers and financial situations, especially with the need to take time off work for treatment or for post-treatment recovery. Thankfully, there are many wonderful organizations, like Blood Cancer United, the American Cancer Society, and Bone Marrow Transplant InfoNet that often have financial support available for patients. Support groups and other offerings, both online and in person, can also be tremendously helpful for patients and loved ones alike.

Shenoy: Elizabeth, I’m curious. Throughout your journey, how important was it to advocate for yourself, ask questions, and actively participate in treatment decisions while balancing your personal goals, your family responsibilities, and everyday life?

Bohannon: I’d say not just self-advocacy but having loved ones who can help advocate for you was critical to my sense of well-being. At some points in the journey, well-being wasn’t the goal; surviving was, [to] be perfectly honest. But the way I have consistently calmed myself is in realizing that multiple myeloma today is a chronic disease. Even when I relapse [or] when a drug stops working, there are other options. There are other things to pursue. But understanding that balance of adverse effects and consequences of a treatment vs the goal of the treatment is a conversation you have to have all the time with this disease.

The other thing worth noting is that when you live with a chronic disease like that, people love to talk about your "fight," and [how] you’re a "warrior." They use all these violent military terms to describe who you are relative to your disease. For many of us, that doesn’t work because the disease isn’t necessarily going to leave you. You’re not going to do battle and come out victorious; you’re going to have to learn to live with it. I think how we frame our experience for ourselves is important as well, and that’s where social workers, nurse practitioners, and therapists can be really helpful in helping us think through how we talk to ourselves and how we talk to others about the disease.