In the past 30 years, the five-year survival rate for people with multiple myeloma has doubled, largely due to breakthrough developments in maintenance therapy using novel drugs. Maintenance therapy after a stem cell transplant (SCT) — also known as a bone marrow transplant — has become the standard of care for people with multiple myeloma. Knowing some important points about long-term treatment can help you better understand — and stick with — your maintenance therapy.

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

Despite advances in treatment options, multiple myeloma remains 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. Nonetheless, new treatment regimens, including maintenance therapy, are keeping people with multiple myeloma in remission longer.

By learning more about myeloma maintenance therapy, you can better discuss treatment options with your oncologist.

1. Maintenance Therapy Helps Maintain Remission

Maintenance therapy aims to prolong remission, or stop disease progression, as long as possible. Another goal is to support quality of life by minimizing toxicity and the risk of side effects.

Lenalidomide (Revlimid), an immunomodulatory drug, is the current standard of care used in maintenance for myeloma. Studies have shown that this medication can significantly improve progression-free survival (the time until a treated disease gets worse). Maintenance therapy begins after induction therapy (the initial treatment) and consolidation therapy (the next treatment) of high-dose chemotherapy with stem cell transplant.

How Long Does Revlimid Work for Multiple Myeloma?

In one study, maintenance therapy with lenalidomide was shown to sustain remission after stem cell transplant for around 57 months, compared with 30 months without maintenance treatment.

Side Effects of Revlimid Maintenance Therapy

At least 20 percent of people who take lenalidomide for multiple myeloma experience one or more of the following side effects:

• Diarrhea or constipation
• Fatigue
• Swelling of the extremities
• 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 troublesome 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. However, your doctor may recommend other drugs and drug combinations for maintenance therapy if your myeloma has relapsed or is considered very likely to do so. Other medications may be available through clinical trials or off-label (not officially approved) use, depending on the myeloma cells’ particular characteristics.

For instance, the drug bortezomib (Velcade) is a proteasome inhibitor 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) — an antibody (immune protein), or biologic drug — is sometimes used for maintenance therapy in cases of relapse after a stem cell transplant.

Dexamethasone and prednisone, which are corticosteroids, are often combined with other maintenance therapies. Corticosteroids have anti-inflammatory properties and can lower immune system response.

Other immunomodulatory medications such as thalidomide (Thalomid) have been used in maintenance therapy for myeloma. However, thalidomide is no longer recommended because of its toxic effects.

Several other drugs are in clinical trials for myeloma maintenance therapy. You can ask your health care providers if any of these studies to investigate potential treatments may be appropriate for you.

3. You May Stay on Maintenance Therapy Indefinitely

Maintenance regimens for myeloma have evolved over the past few years as researchers developed new insights along with new oncology therapies. Although there are no firm guidelines regarding duration, newer protocols (treatment plans in studies) suggest that longer maintenance therapy may have significant benefits.

One goal of maintenance therapy is to eliminate minimal residual disease (MRD) — cancer cells that can linger after stem cell transplant. Negative MRD (no evidence of cancer cells remaining) isn’t always possible, but in one study, lenalidomide maintenance led to negative MRD in 30 percent of participants after 30 months of treatment. The study indicated that the response to lenalidomide deepens — meaning the drug becomes more effective — over time. This has led to the recommendation that people stay on maintenance therapy indefinitely, until they have negative MRD, as long as they tolerate the drug.

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

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. Unfortunately, research shows around 30 percent of people with multiple myeloma don’t stick to their maintenance plan, raising their risk of recurrence.

For the best outcomes, you must follow your plan. Maintenance therapy drugs are sometimes taken orally at home and require adhering to a strict schedule and proper dosage. However, sometimes life gets in the way of treatment. For example, finances, communication barriers, additional health problems, and a lack of support can make it harder to stay on track. It’s important to reach out for help from your health care team if you find this happening to you. In addition, you may be eligible for financial assistance to help pay for treatment if needed.

If you have problems sticking to myeloma maintenance therapy, talk with your doctor about ways to overcome them.

5. Your Oncologist Will Discuss Side Effects With You

All medications have a risk of side effects. Fortunately, maintenance therapy for multiple myeloma has improved to include drugs that are easier to tolerate.

Lenalidomide is considered a well-tolerated drug, which is one reason it has become a standard of care for maintenance therapy. Side effects include an increased risk of changes in blood counts and a higher risk of blood clots.

During follow-up visits, your doctor will monitor you for side effects, and you should tell your health care team if you’ve experienced any unwanted reactions. 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 has improved for people living with multiple myeloma, it hasn’t improved equally for everyone. According to a 2023 analysis of past studies in Clinical Lymphoma, Myeloma & Leukemia, recent advances in available treatments for multiple myeloma have resulted have improved survival outcomes — but “patients from non-white racial/ethnic groups clinically benefit less due to multiple factors including access to care, socioeconomic status, medical mistrust, underutilization of novel therapies, and exclusion from clinical trials.”

Here are a few examples of inequitable treatment cited in the analysis:

• An analysis of The Center for International Blood and Marrow Transplant Research database on stem cell transplants showed that “Hispanics/Latinxs had the lowest SCT utilization rate (16.9 percent), followed by Blacks/African Americans (20.5 percent), than Whites (37.8 percent).”
• “Whites with [multiple myeloma] are also more likely to receive triplet therapies … than Blacks/African Americans,” according to the analysis. Triplet therapy — a combination of three different drugs — has become the standard of care for multiple myeloma.
• In clinical trial enrollment, “there is substantial exclusion of Blacks/African Americans and Hispanics/Latinxs compared with Whites and Asians,” according to the analysis.

The analysis noted, too, that “with equitable access to care, Blacks/African Americans and Hispanics/Latinxs have similar or better survival outcomes than Whites.”

To make sure you get access to the most effective treatment options for you, stay engaged with your health care team. Don’t hesitate to ask questions, and make sure your oncology team understands your goals for treatment.

Talk With Others Who Understand

MyMyelomaTeam is the social network for people with multiple myeloma and their loved ones. On MyMyelomaTeam, more than 26,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.

Are you on continuous therapy for refractory multiple myeloma? Do you still have questions about maintenance therapy for the ongoing treatment of multiple myeloma? Share your experience in the comments below, or start a conversation by posting on your Activities page.