In short
When multiple myeloma comes back after treatment, it is called relapsed or recurrent myeloma. Most people with this disease will experience several cycles of remission and relapse throughout the course of their illness, requiring ongoing treatment to control symptoms and improve quality of life.
What is recurrent multiple myeloma?
Multiple myeloma is a cancer that forms in plasma cells, a type of white blood cell made in the bone marrow. These cells normally help your body fight infections by making proteins called antibodies. In multiple myeloma, cancerous plasma cells build up in the bone marrow and crowd out healthy blood cells.
When myeloma comes back after treatment, it is called a relapse or recurrence. During the course of the disease, most patients will have several cycles of remission (when there's no sign of active myeloma in the body) and relapse. When you relapse, you will need more treatment.
Despite advances in treatment that have improved survival outcomes, multiple myeloma remains an incurable disease. Most patients are at high risk of relapse and need prompt treatment to reduce health problems and complications associated with the disease.
Understanding the terminology
Several terms are used to describe myeloma that returns or doesn't respond to treatment. Understanding these terms can help you communicate better with your healthcare team.
Relapsed myeloma refers to disease that comes back after treatment in a patient who had achieved remission. The first time your myeloma comes back, it is called a first relapse. When it comes back again, it is called a second relapse, third relapse, and so on.
Refractory myeloma means your treatment isn't working. Patients who fail to achieve at least minimal response on initial therapy and progress while on treatment are termed "primary refractory." According to the International Myeloma Working Group, relapsed refractory multiple myeloma is defined as progressive disease, poor response despite treatment, or progression within 60 days of the most recent treatment.
Multiple myeloma is considered "double refractory" if the disease has progressed during or after treatment with both a protease inhibitor (a type of targeted drug) and an immunomodulatory agent (a drug that affects the immune system). If the patient is also resistant to adding monoclonal antibodies (laboratory-made proteins), it is considered a "triple-class" refractory disease, which has a poorer outlook.
Treatment options for recurrent disease
Like your first treatment, you usually receive a combination of targeted cancer drugs, steroids, and possibly chemotherapy when your myeloma comes back. Some people may have another stem cell transplant. The second treatment you receive is called second line treatment, and then the next treatment is called third line treatment, and so on.
There are currently five FDA-approved immunotherapy options for multiple myeloma, which work by taking advantage of your own immune system to help kill cancer cells.
Treatment at first relapse
The first time your myeloma comes back, you might have the same combination of drugs you had as your first treatment if your myeloma has been in remission for longer than 18 months. However, it is more likely that you will receive a different combination of drugs.
At first relapse, treatment options may include combinations such as bortezomib and dexamethasone, daratumumab with bortezomib and dexamethasone, lenalidomide and dexamethasone, carfilzomib and dexamethasone, or other combinations. Some patients may have a stem cell transplant.
Treatment after first relapse
When myeloma comes back again after the first relapse, additional treatment options include various combinations such as ixazomib with lenalidomide and dexamethasone, daratumumab alone, isatuximab with pomalidomide and dexamethasone, panobinostat with bortezomib and dexamethasone, and several other regimens.
You might also have other drugs as part of a clinical trial if you have already had two or more treatments.
Factors affecting treatment decisions
When you relapse, your treatment plan depends on several factors. Your doctor will consider how long your myeloma has been in remission, what treatment you had before, how well the treatments you have had worked, your general health and fitness, and your personal wishes.
Your doctor will discuss your options with you and tell you about different treatment side effects. They will also explain what each treatment involves, such as how long you have it and how often you will need to go to the hospital.
The treatment you receive and when you have it will also depend on which drugs are available through your health insurance or healthcare system. In some countries, specific agencies decide which drugs and treatments are available through government-funded healthcare.
Managing symptoms and side effects
People with relapsed myeloma experience ongoing symptoms and challenges that can significantly affect their daily lives. Compared to people with other kinds of cancer, people with multiple myeloma have to deal with more health problems that make it hard to manage their daily activities, and symptoms often increase as the disease becomes relapsed and refractory.
Common symptoms and complications
Fatigue is very common. When your bone marrow doesn't make enough red blood cells, you may feel tired all the time. This condition is called anemia and affects over 60% of multiple myeloma patients at diagnosis. It's also a side effect of some treatments.
Bone damage is a significant problem in multiple myeloma. The disease makes your bones thin and more likely to break. Steroids, which are commonly used in treatment, also weaken your bones over time. Bone damage can cause severe pain and increase the risk of fractures.
Infections are more common because you don't have enough healthy white blood cells. This is caused by the disease itself and also by many of the drugs that treat it.
Pain can result from bone damage and from nerve damage. Some drugs used to treat multiple myeloma, including certain proteasome inhibitors and immunomodulating agents, can cause peripheral neuropathy, which is pain and numbness in your hands and feet.
Other common issues include loss of appetite, changes in how food tastes and smells, and weight gain from steroids and reduced activity.
Importance of symptom management
Symptom management for myeloma patients remains complex due to the array of treatments given. Patients require thorough regular assessments to help them cope with the adverse effects on their physical and psychological health.
It's important to let your doctor know what you're feeling. There may be medical treatments for some of your symptoms, and your healthcare team can guide you through lifestyle changes that may help. Healthcare professionals play a key role in going beyond just assessing symptoms to offering advice and support to assist you in managing them.
Lifestyle considerations
As the outlook for multiple myeloma has significantly improved and patients remain on therapy longer, there is an increasing need for supportive care approaches that optimize quality of life and functional status over the course of treatment. Taking care of yourself goes beyond appointments and treatments, and there are steps you can take to improve your quality of life and sense of well-being.
Physical activity
Regular activity is important for everyone and is known to help reduce stress and improve sleep. For people diagnosed with multiple myeloma, staying active can help manage pain, cope with fatigue, strengthen physical function, reduce anxiety, boost self-esteem, and improve quality of life.
Evidence strongly suggests that physical activity is safe and effective for adults with cancer. Sports medicine experts recommend people with cancer get at least 30 minutes of moderate exercise at least 3 days a week, plus 2 days of resistance training.
It's normal to not feel up to exercising when you have multiple myeloma, and your fitness levels don't need to be intense to make a difference. Try gentle walking, stretching, or chair yoga. Consider working with a physical therapist who can help you find ways to stay active that work safely for you, especially given concerns about bone damage and fracture risk.
Eating well
There's no one exact diet for multiple myeloma, but eating well can help stabilize your energy and mood. A balanced diet is important for maintaining your health during treatment.
Sleep and rest
Getting adequate sleep is essential for your overall health and can help you cope better with treatment side effects. Poor sleep can worsen fatigue and affect your mood.
Avoiding harmful substances
If you smoke, quitting is important. Limiting alcohol consumption is also recommended. These changes can improve your overall health and how well your body responds to treatment.
Self-care strategies
For patients with a long-term diagnosis of myeloma, self-management workshops and regular education sessions may be helpful. Learning strategies to manage your condition can give you a greater sense of control over your health.
Many patients develop their own self-care measures to manage symptom burden. It's important to discuss these with your healthcare team to ensure they are safe and effective. Staying connected with support groups and other patients can also provide valuable practical advice and emotional support.
