Understanding Your Outlook for Multiple Myeloma

How staging affects outlook for people with multiple myeloma

A primary factor in determining the outlook for people with multiple myeloma is the stage of the cancer at diagnosis.

Like many cancers, multiple myeloma is broken down into various stages that indicate how advanced the cancer is. Staging helps doctors track your disease and prescribe the right treatments.

There are two main systems used to stage multiple myeloma: the Durie-Salmon system and Revised International Staging System (RISS).

Durie-Salmon system

The Durie-Salmon system has been used for decades to stage multiple myeloma. It’s based on the following factors:

• concentration of the protein hemoglobin
• level of calcium in your blood and whether bone lesions are present
• number of abnormal proteins, called monoclonal immunoglobulin (M protein), in the blood and urine
• how well your kidneys are functioning

When all of these factors are taken into account, they can give your doctor a better idea of how advanced the cancer is.

For example, high levels of blood calcium can indicate advanced bone damage. Low levels of hemoglobin and high levels of M protein indicate more advanced disease.

Revised International Staging System (RISS)

RISS is a more recently developed staging system for multiple myeloma. It looks at the following factors to determine the cancer’s stage:

• levels of the protein albumin in the blood
• amount of the protein beta 2 microglobulin (B2M) in the blood
• levels of the enzyme lactate dehydrogenase (LDH) in the blood
• presence of high risk genetic abnormalities in cancer cells

Lower albumin levels can point to more advanced cancer or the presence of inflammation. B2M is a tumor marker, so increased levels can indicate that more cancer cells are present.

High LDH levels can signal that organ damage has occurred. Having more high risk genetic abnormalities can also negatively impact your outlook.

Staging breakdown

Sometimes, you may be told that you have something called smoldering multiple myeloma. This means that there are myeloma cells present in your body, but they’re not progressing or causing any damage to your bones or kidneys. They may also be undetectable in your blood.

Smoldering myeloma is considered to be a precancerous condition and distinct from multiple myeloma.

A 2020 study on multiple myeloma diagnosis notes that smoldering multiple myeloma progresses to multiple myeloma at a rate of approximately 10 percent per year over the 5 years following initial diagnosis.

Apart from smoldering myeloma, multiple myeloma can be broken down into three stages. The table below describes the staging criteria for both the Durie-Salmon system and RISS.

How do doctors determine staging for multiple myeloma?

After you’ve received a diagnosis of multiple myeloma, your doctor may perform the following tests to determine the stage of your cancer:

• Blood tests. During these tests, a sample of blood is taken from a vein in your arm. Blood tests can help determine the levels of many factors important to multiple myeloma staging. Blood tests that may be ordered for this purpose are:
  • hemoglobin test
  • calcium blood test
  • serum albumin test
  • B2M test
  • LDH test
  • tests to assess kidney function, such as serum creatinine and estimated glomerular filtration rate (eGFR)
• Electrophoresis. Electrophoresis is used to separate out the different proteins in a sample. It’s done along with immunoelectrophoresis, which works to detect and quantify specific immunoglobulins like M protein in the sample. Two sample types are used:
  • a blood sample can be used to find M protein in the blood (serum protein electrophoresis, or SPEP)
  • a 24-hour urine sample can be used to find M protein in the urine (urine protein electrophoresis, or UPEP)
• Bone imaging. Your doctor can use a bone X-ray or MRI to see if your multiple myeloma has started to damage your bones.
• Cytogenetics. Cytogenetics is a test that looks for the presence of high risk genetic abnormalities in cancer cells. The sample that’s used for this test comes from a bone marrow biopsy. As understanding of myeloma cytogenetics increases, this type of testing is playing an increasingly larger role in estimating your outlook for multiple myeloma.

Other factors that affect the outlook for multiple myeloma

Other factors, in addition to the stage of your multiple myeloma at diagnosis, can affect your outlook. Two of these are your age and overall health.

Generally, younger people tend to have a better outlook than older adults. The presence of other health conditions can also affect outlook. For example, having heart disease or diabetes that isn’t managed can predict a poorer outlook.

These two factors can also affect your potential treatment options, which can also influence your outlook. For example, a younger person who has otherwise good health may be able to tolerate more intensive treatments than someone who is older or has poorer overall health.

M protein that’s made by cancer cells in multiple myeloma can go on to damage the kidneys. Poor kidney function generally indicates a poorer outlook.

Additionally, some types of genetic abnormalities are considered to be high risk and are associated with a worsened outlook. Your doctor will work to detect the presence of these abnormalities during staging using cytogenetics.

For some people, multiple myeloma can be asymptomatic and progress slowly. However, if it’s found that your cancer is growing and progressing quickly, your outlook is typically worse.

How does active vs. relapsed/refractory multiple myeloma affect outlook?

If you respond well to initial treatment and experience a remission, your outlook is generally better. However, this isn’t always the case.

When multiple myeloma comes back, it’s called relapsed multiple myeloma. Multiple myeloma that doesn’t respond to treatment is called refractory multiple myeloma. People typically don’t develop refractory myeloma until later, after multiple lines of treatment.

Most people with multiple myeloma will experience relapsed/refractory multiple myeloma (RRMM).

The outlook for people with RRMM is generally poorer, although it can depend on many factors, such as the effectiveness of previous treatments as well as your age and overall health.

A 2021 study evaluated 12,987 people with RRMM. Researchers found that the median survival time after reinitiating treatment was 32.4 months. The median survival time means that half of people will live shorter than 32.4 months, and half will live longer.

However, advances in treatment may gradually be improving the outlook for RRMM. For example, a 2021 study estimated that newer treatments for RRMM may increase life expectancy by an average of 2.5 years. More recently approved treatments for RRMM may extend this even further.

What are the treatment options for multiple myeloma?

The treatment of newly diagnosed multiple myeloma can depend on many factors. Your doctor will evaluate these factors to determine a treatment plan that’s right for your particular situation. Some of these factors include:

• the stage of your cancer
• how aggressive the cancer is
• whether high risk genetic abnormalities are found
• your age and overall health
• your preferences

The typical pattern of treatment for multiple myeloma is to start with aggressive induction therapy to reduce the number of myeloma cells in the bone marrow. Consolidation or long-term maintenance therapy then follows.

Induction therapy is typically a combination of:

• targeted therapy
• chemotherapy
• corticosteroids

At some point, most people’s disease will relapse and require a second-line treatment. This may be followed by another period of remission or maintenance therapy, followed by eventual relapse.

This cycle of treatment, remission, and relapse may be repeated several times, with shortened duration of remission for every subsequent line of therapy. At some point, either the disease no longer responds to standard therapies or all standard therapies are exhausted. Your doctor will work closely with you and explain all your options.

Drug-based treatments

Typically, active myeloma is treated with a combination of two or three different drugs. Many drug classes can be used, such as:

• monoclonal antibodies
• immunomodulatory drugs
• proteasome inhibitors
• traditional cytotoxic chemotherapy drugs
• corticosteroids (an important part of nearly every multiple myeloma treatment regimen)

According to the American Cancer Society, a commonly used regimen is one that contains the drugs:

• bortezomib (Velcade), a targeted therapy drug that blocks the activity of proteasomes, enzymes that break down proteins, within cancer cells
• lenalidomide (Revlimid), an immunomodulating drug
• dexamethasone (Decadron, Hexadrol), a corticosteroid drug that reduces your body’s immune response and lowers inflammation

It’s possible that your doctor may recommend a different combination of drugs. This will depend on factors like your age and overall health, whether a stem cell transplant is planned, and whether you have bone or kidney disease.

Stem cell transplants

In some cases, a stem cell transplant (SCT) is an option. It’s referred to as “consolidation” treatment and is typically used after you reach your first remission to lengthen the remission.

Ideal candidates for this procedure are typically younger and in good overall health. While an SCT won’t cure your myeloma, it can improve your outlook.

An SCT is done through these general steps:

1. Before the procedure, healthy stem cells are collected from your blood or bone marrow.
2. Next, you’re treated with a high dose of chemotherapy or radiation to kill all of the cells in your bone marrow, including the cancer cells.
3. Then, the healthy stem cells that were previously collected are infused back into your body. The goal is for these cells to establish a bone marrow that’s free from cancer cells.
4. It’s likely that you’ll need to continue to take a drug regimen after your SCT. This can help prevent the cancer from coming back.

Additional treatments

There are also a variety of other treatments that you may receive as a part of your care. A few examples include:

• drugs called bisphosphonates or radiation therapy to help address bone disease
• plasmapheresis to remove M protein that’s built up in your blood
• antimicrobial drugs or intravenous immunoglobulin (IVIG) to prevent or treat infections
• blood transfusions or drugs called erythropoiesis-stimulating agents to boost red blood cell counts
• platelet transfusions to help with low platelet levels

Treatment for relapsed/refractory multiple myeloma

At some point, most people with multiple myeloma will experience RRMM. In these situations, the course of treatment will depend on factors like:

• how long after treatment relapse occurs
• how well your cancer responded to previous treatments
• how aggressive the RRMM is
• whether high risk genetic abnormalities are found
• your age and overall health
• your preferences

If a previous treatment regimen worked well initially, your doctor may consider using the same therapy again. It’s also possible that your doctor will recommend an alternative treatment plan, which may include:

• starting an alternative drug regimen, which may involve one or a combination of:
  • targeted therapy drugs
  • immunomodulating agents
  • corticosteroids
  • chemotherapy drugs
• following the drug regimen with one or more SCTs
• using CAR-T therapy, such as idecabtagene vicleucel (Abecma), a type of immunotherapy in which some of your body’s own T cells are modified to attack cancer cells

If your myeloma has relapsed multiple times, your doctor may recommend enrolling in a clinical trial, where new drug combinations and forms of treatment are investigated in people with limited or no Food and Drug Administration (FDA) approved treatment options.

What are the 5-year survival rates for multiple myeloma?

Survival rates tell you what percentage of people with the same type and stage of cancer are still alive at a certain point in time (usually 5 years) after diagnosis.

For example, a 5-year survival rate of 65 percent means that, on average, 65 percent of people with that type and stage of cancer are alive 5 years after their diagnosis.

The National Cancer Institute’s SEER program collects data on cancers in the United States and provides information on topics like prevalence and outcome.

According to SEER, the overall 5-year survival rate for myeloma between the years of 2011 and 2017 was 55.6 percent.

It’s important to note that SEER doesn’t group cancers according to stage. Instead, it lists them into stages based on where in the body the cancer is. For myeloma, this can be either localized or distant:

• Localized. A single tumor, called a solitary plasmacytoma, is present in or outside the bone. According to SEER, the 5-year survival rate for this stage is 77.5 percent. Only 4 percent of cases are diagnosed at the localized stage.
• Distant. This stage is what is classically thought of as multiple myeloma. It makes up 96 percent of all diagnoses. According to SEER, the 5-year survival rate for this stage is 54.5 percent.

It’s important to note that survival rates are calculated off of data collected from a large number of people with multiple myeloma. Because of this, they don’t account for individual factors like your age, overall health, and response to your specific treatment regimen.

These figures can also include people treated over the past 5 to 25 years. During this broad time period, treatment for multiple myeloma has improved a great deal.

Many new treatments for multiple myeloma have been approved by the FDA since 2017, and many more are under development, so that number has likely improved and will continue to improve.

Other facts and statistics about multiple myeloma

According to SEER, myeloma is the 14th leading cause of cancer deaths in the United States. It’s estimated that there will be 34,920 new myeloma diagnoses and 12,410 deaths due to myeloma in 2021. That’s only 2 percent of all cancer deaths.

SEER estimates that in 2018 there were an estimated 149,956 Americans living with myeloma. The lifetime risk of developing myeloma is 0.8 percent.

Multiple myeloma is primarily diagnosed in people ages 65 or older. According to the American Cancer Society, people under age 35 represent less than 1 percent of cases.

Living with a multiple myeloma diagnosis

Receiving a diagnosis of multiple myeloma can be difficult at first. You may have questions about the disease, your treatment, and your outlook.

It can be helpful to start by educating yourself and your loved ones about multiple myeloma so you, and those around you, know what to expect. Learning more about multiple myeloma will help you and your caregivers make appropriate decisions about your care.

Establish a strong support system of people who can help you cope with any problems or anxieties you may have. This can include caregivers, loved ones, and medical experts. You might also benefit from talking with a mental health professional about the feelings you have.

You may also find that joining a multiple myeloma support group is an encouraging and rewarding experience. You’ll be able to meet others who have multiple myeloma. They can offer advice and tips for coping.

When living with multiple myeloma, treat your body well. Eat nutritious foods. Make sure you get enough rest and relaxation so you’re better able to deal with stress and fatigue. Set achievable goals that help you feel satisfied without overextending yourself.

How to support those with multiple myeloma

If you’re caring for someone with multiple myeloma, educate yourself about the disease. Learn more about cancer symptoms and the side effects of treatment. You can find information about these topics at your local library or online, and by speaking with your loved one’s doctor.

Have a discussion with your loved one about their disease and treatment. Show your support by asking what role you should play in their treatment. Be honest with them and with yourself. Seek additional help if needed.

Caring for a loved one with multiple myeloma can be challenging at times. You might also benefit from joining a special caregiver support group where you can talk with others also caring for loved ones with multiple myeloma.

The takeaway

There may not be a current cure for multiple myeloma, but receiving treatment can help promote remission. Remissions can sometimes last for years. However, many people with multiple myeloma will eventually experience relapsed/refractory multiple myeloma.

The outlook for people with multiple myeloma depends on many factors, such as the stage of the cancer at diagnosis, the type of treatment given, and your age and overall health. Additionally, like many cancers, the sooner you receive a diagnosis and begin treatment, the better your outlook.

Due to recent advances in treatment, the outlook for people with multiple myeloma, including relapsed/refractory multiple myeloma, has been steadily improving. Doctors and scientists continue to discover newer, more effective ways to both diagnose and treat this disease.

Remember, the outlook for everyone with multiple myeloma is different. Because of this, be sure to discuss your individual outlook, and how treatment options may affect that outlook, with your doctor.