Beth Faiman, PhD

Content Sponsored by Takeda Pharmaceuticals


Nearly everyone with multiple myeloma relapses. That doesn’t make it easy.

A cancer diagnosis is traumatic, especially when the cancer is treatable, but not curable. In multiple myeloma, the disease is known for its pattern of remission followed by relapse. In fact, all people with multiple myeloma will have a relapse or become resistant to treatment at some point.

Recent data from newly diagnosed patients show that about 10% of those starting a novel therapy had an early relapse (within 12 months), while 28% had their first relapse within 24 months of starting treatment. Peak risk of early relapse in this study was between 12 and 18 months.

 Typically, the longest remission time is with your first treatment, so early relapse can be an indicator of more aggressive disease progression.

Even knowing that a relapse happens to everyone eventually, it can come as a shock when it happens to you, especially if you haven’t had any new symptoms. For many, a relapse is a setback that reminds them of their initial diagnosis and brings back the emotions they felt at that time.

To find out more about how the first relapse impacts people with multiple myeloma, Takeda Pharmaceutical Company partnered with HealthTree Foundation to survey 247 people living with multiple myeloma, 237 of whom had experienced their first relapse.

This deep dive into the relapse experience revealed insights about how people with multiple myeloma make treatment decisions when faced with disease recurrence and offered perspectives on managing the physical and emotional burden that comes with a relapse.

Taken by surprise: 63% of those who relapsed had no new symptoms

The first thing to know about relapse is that you may not know you’ve relapsed. Relapses differ from person to person and can be symptomatic or asymptomatic. Research shows that people who have a “silent relapse” (detected by blood test and not causing symptoms) have better outcomes than those who are treated after symptoms reappear.

  In symptomatic relapse, symptoms may be similar to those experienced when the diagnosis of multiple myeloma was first made.

In the HealthTree Foundation survey, 63% of survey respondents did not experience new or worsening symptoms when they were diagnosed with a relapse. For 72%, relapse was discovered via test results, demonstrating the importance of regular checkups to monitor any M spikes.

Elevated M spikes, or myeloma gamma globulin levels in the blood, can indicate a relapse.

You may start with clinic visits and tests every 2 to 3 months. The time between follow-ups can change based on your results.

Relapses can be detected with blood tests, urine tests, bone imaging studies, or bone marrow biopsy. In most cases, your hematologist-oncologist may suspect a relapse after receiving blood work or imaging test results that show changes in blood globulin levels, developing bone lesions, and/or increases in bone marrow plasma cells.

Your healthcare team may also use the International Myeloma Working Group (IMWG) criteria for remission and relapse to monitor your disease. IMWG is a collaboration that includes a number of global institutions specializing in cancer care. They have defined 2 main types of relapses—biochemical and symptomatic.

 The first type is a symptomatic relapse where you have symptoms of organ damage at disease relapse as detected using CRAB. CRAB criteria includes

enal impairment (loss of kidney function)

nemia (decreased hemoglobin levels in the blood)

The second type is a biochemical relapse meaning there is an increase in paraproteins (abnormal protein in the blood, sometimes called M protein) without “CRAB.” Biochemical relapses can be detected by assays such as

These medical advances allow several hundred thousand to millions of bone marrow cells to be examined for the presence of residual multiple myeloma cells.

Support and shared decision-making can help you navigate the road ahead

As you’ve probably figured out, multiple myeloma is an ongoing journey. Relapses may be common and expected, but when it happens to you, it can be emotionally overwhelming and cause fear, anxiety, or sadness. Partnering with your healthcare team or support system can help you get through it. It is essential that you discuss your treatment goals with them, so they have a full understanding of what you’re looking to get out of treatment. In the HealthTree Foundation survey, 39% of people with relapse weren’t asked about their treatment goals.

Don’t be afraid to talk with your healthcare team about how you feel about the relapse, any worries you may have about treatment side effects, or concerns around time from work or family disruptions. Also talk with them about future plans you may have around moving, travel, or taking up hobbies. For example, a patient with plans to travel to Europe for an extended period was able to work with his healthcare team to develop a treatment plan that allowed him to fulfill that dream, exemplifying how open conversations result in solutions that control disease after first remission, but also enable patients to live life on their terms.

There are many resources available to you to help start conversations, explore treatment options, or get support from others. You can find some of them below.

Focus on your physical and emotional well-being

Consider a peer mentor, who shares your experience. Organizations that offer peer mentor programs include:

Imerman Angels: free service matching individual with Mentor Angels (

HealthTree Foundation, Coach Program: empowers patients and caregivers with personalized peer-to-peer mentoring to find and use the best resources to better navigate their care (

Leukemia & Lymphoma Society (LLS) First Connection Program: free service that matches trained peer volunteers with patients and loved ones (

Multiple Myeloma Research Foundation (MMRF) Myeloma Mentors: connects patients/caregivers with trained mentors who share their experience (

https://themmrf.org/resources/myeloma-mentors

Join a support group community to get information, support, education, and networking. Support groups are available here:

International Myeloma Foundation (IMF): nationwide network of more than 150 myeloma support groups with patient, survivor, and care partner members (

HealthTree Foundation: Connected multiple myeloma community discuss topics ranging from disease management and research to lab test recommendations and clinical study updates (

HealthTree also offers access to Regional Cure Teams comprising volunteer, geographically-based groups. To see how you can get involved, visit 

https://healthtree.org/myeloma/cure-teams

Leukemia & Lymphoma Society (LLS): monthly meetings facilitated by 2 credentialed healthcare/mental health professionals, with 130 groups near LLS chapters and in outlying areas. (

Sharing your priorities and perspectives can help you think about your goals after a relapse. Otherwise, you may not be able to clearly communicate what’s important to you when you talk with your healthcare team. Having open, transparent, and proactive conversations about your treatment and life goals with others can help you get what you want out of treatment and lighten the load of making decisions by yourself.

82% of respondents in the HealthTree Foundation survey reported that their healthcare team prepared them for a relapse

Just 44% said they were asked about their treatment and lifestyle goals

Improving collaboration around treatment decisions and lifestyle preferences is essential to help you and your healthcare team make sure that the path you take after relapse is the right one for you.

How to talk about your treatment preferences with your healthcare team

Part of planning for a productive discussion of your treatment and lifestyle goals and objectives is knowing what questions to ask. This doesn’t have to be a solitary exercise—you can involve a spouse/significant other, family/friends, and counselor or social worker to make sure their concerns are covered as well. The list below will give you a starting point.

People who experience their first relapse often want to be treated as early as possible, with 88% of HealthTree Foundation survey respondents reporting that they wanted to start therapy right away. About half of those surveyed were treated within 1 to 3 months, with an additional 23% being treated within 4 to 6 months.

Most of those who delayed treatment after relapse did so on the advice of their healthcare team, typically due to speed of relapse being slow/indolent.

Other reasons cited for delays were seeking a second opinion, personal or family considerations, and insurance issues. The majority of respondents (74%) preferred oral treatment. 63% of patients accepted potential side effects as a necessary trade-off for treatment effectiveness. Only 14% discussed side effect concerns with their healthcare team and adjusted their treatment plan accordingly.

In general, survey respondents reported relying heavily on the advice of their healthcare team to decide on treatment start after first relapse, with 93% saying they took their doctor’s recommendations almost every time or all the time. This response vastly outweighed self-reported use of other educational sources, including websites (58%), Google searches (38%), journal articles (29%), pharma websites (19%), and social media (4%).

 While this particular survey showed that myeloma specialists, hematologists, and oncologists had the most influence during treatment discussions, nurses and advanced practice providers (such as nurse practitioners or physicians assistants) also play a significant role in guiding treatment.

 This shows why it’s important to prepare for consultations with all the healthcare team members available to you to ensure these crucial discussions are productive and meaningful.

There are many resources available to you to help you prepare for these treatment conversations. By learning and empowering yourself ahead of time, you can be sure you’re getting the most out of your treatment. Here are some organizations you can turn to for information

IMF has a treatment discussion tool you can use to prioritize your treatment goals in advance of conversations with your healthcare team (

https://www.myeloma.org/resource-library/tip-card-myeloma-treatment-discussion-tool

), along with other resources and education

HealthTree Cure Hub Registry invites patients to connect their medical records and shows personalized potential treatment options based on your prior therapies and responses (

LLS offers access to information specialists, nutrition consultation, information on clinical studies, podcasts, and more (

MMRF can connect you with a patient navigator, in addition to a personalized program designed to get you on the path to the best results, with the right team, the right tests, and the right treatment (

Satisfaction with the treatment experience

Treatment satisfaction was directly correlated with disease stabilization in the HealthTree Foundation survey. Of those dissatisfied with treatment, 53% pointed to inadequate efficacy, while 62% of those who reported being satisfied attributed their satisfaction to disease remaining stable. Other factors that contributed to treatment satisfaction were healthcare team support (41%), family/caregiver support (31%), and positive impacts on daily activities (28%) and quality of life (28%).

If you have concerns about your treatment regimen, be sure to raise them with your healthcare team as soon as possible as there might be alternative approaches.

Tips for living with multiple myeloma after first relapse

Multiple myeloma is a remitting/relapsing disease, which means that it follows a pattern of symptoms that worsen, and then improve or go away. Nearly all of those diagnosed will experience a relapse followed by remission.

Most people with standard-risk multiple myeloma stay in remission for 2 to 3 years, although remission can last longer

Others may have early relapse, which happens during or shortly after their first line of therapy, or very early relapse, which happens within 9 months of diagnosis

That is why it’s important to have regular conversations and follow-ups with your healthcare team.

If you think you’re experiencing new or worsening symptoms, don’t delay—let your healthcare team know right away. You should also be sure to schedule and complete all tests recommended by your healthcare team. As we found out in our survey, many patients don’t have symptoms and only find out their multiple myeloma has relapsed when they get their test results.

The first relapse can be one of the most difficult points in your multiple myeloma journey. In studies of people after first relapse, a high proportion of respondents reported low scores on energy levels, ability to do daily tasks, concentration, and social interaction. Additionally, they felt that their relapse increased the burden on their family in terms of care and support, and time spent at the hospital for treatment. Lastly, many reported feeling anxious about the future and unsure about what to expect next.

Feeling angry, down, or disappointed after a first relapse is natural. Be open and honest about your challenges and feelings with your healthcare team and your friends and family. Managing stressful emotions through social support may help. Research shows that getting information through a support group helps reduce tension, anxiety, and tiredness, and may lower the risk of depression.

Listen to your inner voice. Some days, you may just want to be by yourself. Others, you may feel up to a social outing

Stay in contact with your friends and family and be honest about how you’re feeling

Consider joining a support group, consulting a social worker, or visiting a psychologist so you can better express your emotions and expectations to those around you

Some patient organizations, such as HealthTree Foundation, have emotional support programs that may be able to help you. We’ve provided helpful links throughout this article so you can explore organizations that offer different types of support

Do your best to de-stress. Studies have shown that chronic stress is associated with the release of hormones called glucocorticoids. These hormones may stop tumor cell death and contribute to resistance to treatment.

Be physically active. The American College of Sports Medicine International Multidisciplinary Roundtable on Physical Activity and Cancer Prevention and Control recommends moderate-intensity physical activity during and after cancer treatment to reduce anxiety and depression symptoms

Diet is an influential risk factor for cancer. Multiple studies have shown that increasing dietary fiber (fruit, whole grains) and fish can positively impact the gut microbiome. Evidence suggests that microbes in the intestinal tract can delay the development of multiple myeloma. Increasing the diversity of these microbes through a plant-based diet that includes whole grains and seafood was associated with reduced risk of multiple myeloma

Do things that you enjoy and that make you happy. That could be anything from taking your dog for a morning walk, to tending your garden, to going for a swim

Combine physical activity with social support. Sometimes it’s easier to have difficult conversations with others while taking a walk, doing yard work, or attending a class together

The multiple myeloma journey is one of peaks and valleys. People living with multiple myeloma are often faced with relapse, resulting in the need for re-treatment. Our data shows that most patients are surprised with a first-relapse diagnosis, as they have not experienced symptoms that would indicate disease progression. This can lead to stress, anxiety, and uncertainty about how to move forward. Relapses take a physical, emotional, and financial toll, but staying involved with friends and family, as well as taking care of your physical and emotional needs, can help you feel better.

Beyond taking care of yourself, be sure to discuss your treatment and life goals with your healthcare team. Treatment decisions are multifactorial and typically made by the healthcare team, with multiple myeloma specialists having the most influence during the treatment discussion. Seeking information and providing input into the timing and type of treatment you desire is key to treatment satisfaction, although most patients in our survey reported they were not asked about their preferences. This points to the need for improved healthcare team/patient communication throughout the process—not only to prepare you and your loved ones for a potential relapse, but to consider treatment and life goals once disease recurs.

Concise review of the disease and treatment options

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Shah U, Parikh R, Castro F, et al. Dietary and microbiome evidence in multiple myeloma and other plasma cell disorders. 

Beth Faiman, PhD

First relapse in multiple myeloma: the patient perspective

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