Multiple myeloma is a cancer that starts in a type of white blood cell called a plasma cell. It’s relatively rare, making up less than 2 percent of cancers, but it’s the most common type of plasma cell tumor, according to the CDC.

The survival rate of multiple myeloma has improved in recent years, but initial treatment still isn’t effective at completely getting rid of the cancer in the vast majority of cases. Myeloma is known as refractory if it’s resistant to treatment or becomes resistant during treatment.

Keep reading to learn more about refractory myeloma, including how it’s diagnosed and treated.

Refractory multiple myeloma is when myeloma doesn’t respond to treatment or stops responding to treatment.

Your doctor might use the term primary refractory multiple myeloma if your cancer doesn’t have at least a partial response to the initial treatment.

According to 2020 research, myeloma is classified as relapsed or refractory when it initially responds to treatment but stops responding or starts progressing again after initial treatment.

A 2020 study found that a majority of people with multiple myeloma will require additional treatment.

Relapsed vs. refractory myeloma

The terms relapsed and refractory both mean that your myeloma didn’t respond to treatment.

Cancer that has relapsed has gone into remission and then came back. Refractory means the cancer stopped responding to treatment but never went into remission.

Remission is when the signs and symptoms of your cancer are reduced or disappear completely.

When you have refractory multiple myeloma, you may develop some of the same symptoms you originally had before treatment. You may also develop other myeloma symptoms that you didn’t have before.

The most common symptoms of myeloma fall under the acronym CRAB, which stands for:

While undergoing treatment, you’ll receive regular tests to monitor your cancer. Your healthcare team will use a combination of blood tests, urine tests, and imaging to look for signs of myeloma.

They may also perform a bone marrow aspiration and biopsy. During this procedure, a healthcare professional extracts a small section of bone marrow with a thin needle to analyze the cells in a lab.

According to 2019 research, some specific diagnostic tests your doctors may use include:

Questions to ask your doctor

Learning that your cancer isn’t responding to treatment can be disheartening, but the survival rate of refractory multiple myeloma is continuing to rise due to advances in treatment. It’s often helpful to create a list of questions to ask your doctor ahead of your appointment.

Some questions you may want to ask include:

  • What are my treatment options?
  • What will my treatment schedule be?
  • How much will my treatment cost?
  • What’s the outlook for refractory multiple myeloma?
  • How will this affect my quality of life?

If initial treatment fails, your healthcare team can recommend a new treatment plan to alleviate symptoms, prevent organ damage, and help treat the cancer.

Your doctor might recommend re-treatment with the same therapy if you had a partial response for at least 6 months with an acceptable toxicity profile. They may also recommend trying new medications.

Factors doctors consider when recommending treatment for refractory or relapsed myeloma include:

  • age and frailty
  • presence of other health conditions
  • aggressiveness of relapse
  • response to initial therapy
  • symptoms and disease progression
  • cost

A 2016 study found that 40 to 50 percent of people can achieve a clinically relevant response to treatment after their first relapse.

The 5-year relative survival rate for a person with multiple myeloma in the United States is 56 percent. This means that the chance of being alive 5 years later is 56 percent.

This statistic, however, depends on the stage of multiple myeloma at the time of diagnosis. People who are diagnosed early, when multiple myeloma is localized, have higher rates of survival.

The outlook for refractory multiple myeloma is generally poorer than myeloma that responds to initial treatment. However, advances in treatment mean that people with refractory multiple myeloma now have many treatment options available.

In a 2021 study, researchers found that, among 12,987 people with relapsed or refractory multiple myeloma, half of the participants lived at least 32.4 months after restarting treatment.

In the conclusion of a 2022 study, researchers predicted that relapsed and refractory myeloma survival will soon be improved by the introduction of new biomarkers.

New treatments improving outlook for multiple myeloma

New therapies and a better understanding of multiple myeloma are changing treatment and improving the outlook for this disease.

According to a 2019 study, CAR T-cell therapy that targets the B-cell maturation antigen (BCMA) has produced sustained remission in those with relapsed or refractory multiple myeloma.

Almost 75 percent of participants responded to the therapy and one-third had a complete response (disappearance of all signs of cancer).

Finding out that your initial cancer treatment wasn’t effective can bring about a lot of emotions. Joining a support group can help you share your experiences and make you feel connected to others going through the same experience.

Many support groups are available. Some include:

Learn more about multiple myeloma support groups.

Myeloma is known as refractory if it doesn’t respond to treatment or stops responding to treatment. If you have refractory myeloma, your doctor may recommend re-treatment with the same drugs used during the initial therapy or trying a new combination.

Finding out that your myeloma is refractory can be difficult, but the survival rate of refractory myeloma is higher than ever because of advances in treatment. Your doctor can help you come up with a treatment plan that gives you the best chances of survival.