Over the past 30 years, the five-year survival rate for people with multiple myeloma has doubled. This improvement is due to new maintenance therapies that use new drugs. Maintenance therapy after a stem cell transplant (SCT) is now a standard part of care for many people with myeloma. Learning more about long-term treatment can help you better understand your care and stay on track with maintenance therapy.

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Despite advances in treatment options, multiple myeloma is still an incurable disease for most people. In most cases, multiple myeloma relapses (returns) after treatment. Myeloma may also be refractory, meaning the cancer resists treatment. But new treatment regimens, including maintenance therapy, are keeping people with multiple myeloma in remission longer.

By learning more about myeloma maintenance therapy, you can have more informed conversations with your oncologist about treatment options.

1. Maintenance Therapy Helps Maintain Remission

Maintenance therapy aims to keep myeloma in remission (stop disease progression) for as long as possible. Another goal is to support quality of life by lowering toxicity and reducing the risk of side effects.

The five-year survival rate for people with myeloma has doubled during the past 30 years, largely due to developments in maintenance therapy.

Lenalidomide (Revlimid), an immunomodulatory drug, is the current standard of care used in maintenance treatment for myeloma. Studies show that this drug can significantly improve progression-free survival. This is the length of time before the disease begins to get worse.

Maintenance therapy usually starts after induction therapy (the first round of treatment) and consolidation therapy (bone marrow transplant).

How Long Does Revlimid Work for Multiple Myeloma?

In one study, maintenance therapy with lenalidomide helped keep myeloma in remission for around 57 months after a bone marrow transplant. For people who did not receive maintenance treatment, remission lasted about 30 months.

Side Effects of Revlimid Maintenance Therapy

At least 20 percent of people who take lenalidomide for multiple myeloma experience one or more side effects. These include:

• Diarrhea or constipation
• Fatigue
• Swelling in the arms or legs
• Insomnia (difficulty sleeping)
• Muscle cramps or spasms
• Abdominal or back pain
• Nausea
• Fever
• Respiratory tract infections
• Digestive tract infections
• Cough
• Rash
• Shortness of breath
• Dizziness
• Loss of appetite
• Tremors

Report any side effects to your doctor. They can often help you find ways to manage uncomfortable symptoms.

2. Drugs Used in Myeloma Maintenance Therapy Can Vary

Lenalidomide is currently the only single drug approved by the U.S. Food and Drug Administration (FDA) for myeloma maintenance therapy after a bone marrow transplant. But your doctor may recommend other drugs for maintenance therapy if your myeloma has relapsed or has a high risk for relapse.

Other medications may be available off-label, meaning they are not officially approved for maintenance, or through clinical trials. The choice depends on the specific features of your myeloma cells.

For example, bortezomib (Boruzu, Velcade) is a proteasome inhibitor. It may be used for maintenance therapy in people with certain high-risk genetic abnormalities. Another proteasome inhibitor, ixazomib (Ninlaro), has also been used for high-risk myeloma maintenance therapy.

Daratumumab (Darzalex) is a monoclonal antibody, also called a biologic drug. It’s a synthetic (lab-made) version of an immune system protein. Daratumumab is sometimes used as maintenance therapy when myeloma returns after a bone marrow transplant.

Dexamethasone and prednisone are corticosteroids. They’re often used along with other maintenance therapies. Corticosteroids have anti-inflammatory properties and can lower immune system activity.

Several other drugs are being developed in clinical trials for myeloma maintenance therapy. If you’re interested in joining a study and helping researchers find new treatments for multiple myeloma, talk to your cancer care team.

3. You May Stay on Maintenance Therapy Indefinitely

Maintenance treatment for myeloma has evolved over the past few years. Researchers have learned more about the disease and developed newer oncology therapies. There are no strict rules for how long maintenance therapy should last. However, newer protocols (treatment plans in studies) suggest that longer maintenance therapy may offer greater benefits.

Studies show that maintenance therapy seems to become more effective the longer you take it.

One goal of maintenance therapy is to eliminate minimal residual disease (MRD). MRD is a measure of the number of cancer cells that remain after a bone marrow transplant. Reaching MRD-negative status means no cancer cells are detected. This isn’t always possible.

In one study, lenalidomide maintenance led to MRD-negative results in about 30 percent of participants after 30 months of treatment. The study suggested that lenalidomide may become more effective over time. Because of this, many doctors recommend that people stay on maintenance therapy indefinitely, until they have negative MRD, as long as side effects are manageable.

4. Sticking to Your Maintenance Therapy Is Vital

People with multiple myeloma are living longer than ever. But to get the best results, you need to stick to your maintenance therapy. Research shows that about 30 percent of people with multiple myeloma don’t stick to their maintenance plan as prescribed. This raises their risk of the disease coming back.

For the best results, it’s important to follow your treatment plan closely. Many maintenance therapy drugs are taken by mouth at home. This means keeping to a strict schedule and taking the correct dose. Life challenges can sometimes make this hard. For example, finances, communication barriers, other health problems, or lack of support can all make it harder to stay on track.

If this happens to you, reach out to your healthcare team. They may be able to help. In addition, you may qualify for financial assistance to help pay for treatment if needed.

5. Your Oncologist Will Discuss Side Effects With You

All medications have a risk of side effects. The good news is that maintenance therapy for myeloma now includes drugs that are often easier to tolerate than older options.

Lenalidomide is generally well tolerated. That’s one reason it has become a standard maintenance therapy for multiple myeloma. Possible side effects include changes in blood counts and a higher risk of blood clots.

During follow-up visits, your doctor will monitor you for side effects. Let your healthcare team know if you notice any reactions that are uncomfortable or concerning. Be sure to discuss potential side effects with your doctor when planning your maintenance therapy.

6. Access to Myeloma Treatment Isn’t Equal for Everyone

While survival rates have improved for people living with multiple myeloma, these improvements haven’t been equal for everyone. An analysis of past studies found that recent advances in myeloma treatments have led to better survival outcomes overall. However, people from nonwhite racial/ethnic groups often benefit less from these advances.

Several factors may play a role. These may include having less access to care, lower participation in clinical trials, and other factors that make it harder to receive newer therapies.

The analysis gave several examples of unequal treatment:

• Latinx people had the lowest rate of SCT use, at 16.9 percent. This was followed by Black people, at 20.5 percent. In comparison,white people had a higher transplant rate of 37.8 percent.
• White people with multiple myeloma are also more likely to receive triplet therapies than Black people. Triplet therapy, which combines three drugs, is now a standard treatment for multiple myeloma.
• Clinical trial enrollment showed significant exclusion of Black and Latinx people compared with white and Asian people.

To make sure you have access to the best treatment options, stay actively involved with your healthcare team. Ask questions, and make sure your oncology team understands your treatment goals.

Join the Conversation

On MyMyelomaTeam, people share their experiences with multiple myeloma, get advice, and find support from others who understand.

How long have you been taking maintenance therapy for multiple myeloma? Let others know in the comments below.