Ask me anything: Multiple myeloma

Editor's note: The responses provided in this discussion are for educational purposes only and are not intended as a substitute for medical advice from your healthcare team. Questions and responses have been edited for clarity and brevity. See the full discussion here.

By Mayo Clinic staff

Multiple myeloma, a cancer that forms in white blood cells called plasma cells, was once considered a terminal disease with few available treatments. But in the last two decades, physicians and scientists have helped advance research and pioneer treatments that extend survival and quality of life for people with the disease.

"Just 25 years ago, multiple myeloma was thought to be incurable, with a survival rate of about two years. Today, I have patients living 20 years or more past their diagnosis date," says Rafael Fonseca, M.D., the Getz Family Professor of Cancer and hematologist at Mayo Clinic Comprehensive Cancer Center.

Dr. Fonseca answered Reddit users' questions about multiple myeloma treatment, early detection and the latest research during his "Ask Me Anything" event in September 2024. Here are the highlights:

Detecting multiple myeloma early

Q: I have a family history of multiple myeloma. I get a blood protein test about every five years. Is there more I should do to monitor for it?

A: Recent studies have focused on the possibility that certain families may have certain genes that make them more prone to get cancer. This is especially true in families with several members who have myeloma. We estimate that of all myeloma patients only about 8% have this genetic predisposition. These are people who are diagnosed at a very early age (40 or younger). We are trying to study other associations that might indicate genetic predisposition.

Q: My mother passed in October 2022 at 76, 16 years after a multiple myeloma diagnosis. What screenings would you recommend for me?

A: There’s no agreed-upon screening procedure for myeloma-related conditions. However, any doctor should be aware of the possibility of the disease if a patient has elevated blood protein (usually found with routine lab tests), kidney function is decreasing, anemia develops or destruction of the bones occurs.

Q: What are the early signs and symptoms of multiple myeloma?

A: Early in the disease, one might have no symptoms. This is called smoldering myeloma. When the disease is active, one could face fatigue (due to anemia), bone pain, or in extreme cases, unexplained fractures. The symptoms can be nonspecific, but blood tests could show anemia (low hemoglobin or red blood cells), kidney problems (high creatinine) or high calcium. Sometimes people get X-rays, and this may show bone destruction (loss of bone).

Treating multiple myeloma

Q: My mother has had multiple myeloma for 15 years. She had stem cell transplants in 2008 and 2012 and was then given Velcade shortly after the second stem cell transplant. Within the past 6 months her free light chains have increased dramatically. What would you recommend as a treatment after Velcade has run its course?

A: Your family will need to discuss treatment options with your mother's doctor to determine the next best step. I recommend patients have at least one consult with a myeloma specialist in their area. Myeloma has become so complicated it is hard for a general oncologist to keep up to date on all the details regarding best practices.

Q: My sister has multiple myeloma and just had a stem cell replacement. She's had a rough go.

A: Stem cell transplant remains one of the main forms of treatment for multiple myeloma. Some of the best long-term outcomes are for patients who go through this process. I hope she has a speedy recovery.

Q: I am scheduled for a T-cell transfusion next month and I am wondering what the recovery time will be.

A: T-cell transfusion, also called T-cell transfer therapy, is a type of immunotherapy that involves collecting your immune cells, modifying them in a lab and then infusing them back into your body to help your immune system kill cancer cells. For most patients the recovery time is not long. People get a low dose of chemotherapy before the cells are given, and usually patients have no symptoms. Possible reactions, such as cytokine release syndrome (CRS) or neurotoxicity (ICANS), can happen about a week later. Most patients do quite well. Medical teams take every step of the procedure seriously and are very attentive. I think CAR-T cell therapy is generally "easier" on the patient than stem cell transplants.

Q: I was diagnosed with multiple myeloma on Sept. 30, 2023. I've gone thru the GRIFFIN trial protocol, had Melphalan and an autologous stem cell transplant. Now I'm on my first of two final GRIFFIN trial protocols before I go on a maintenance dose of lenalidomide (Revlimid) for two years. I feel good!

A: You are getting the best current form of treatment. I am glad to hear you are feeling well. Our goal is to help patients improve so they can return to their usual selves. The results of this approach suggest that eight to nine patients may not need to change treatments in four to five years. I am also hopeful that for some patients, this will be the last and only treatment they will ever need. Keep up the good spirits!

Advancements in multiple myeloma

Q: What can patients and people who care do to advance the speed of big developments in medicine?

A: We are fortunate to be able to do clinical trials. Patients' willingness to participate always helps. Participation in a research clinical trial is always voluntary and in no way affects the care we provide to patients.

We are also fortunate to have a biotech and pharmaceutical environment that has seen myeloma as a model for drug development. The Food and Drug Administration has approved over 20 drugs over the last many years, with many extra ways to use these drugs.

Q: My uncle, who is in mid-50s, was just diagnosed with multiple myeloma. He is still in a world of pain and suffering. Is there any chance in the near future that a cure will be found? Are there any studies or programs that have shown promising results?

A: I am sorry to hear about your uncle. Unfortunately, one of the aspects of myeloma is that it can damage bone structure. Some parts of our bones are so complicated, it is hard for them to go back to normal. This is especially true of the spine. Because of that, some people continue to have pain even after they have been treated, and even if cancer cells are no longer detectable. It's more of an after-effect. People can sometimes get medication to encourage bone formation. In some cases, patients need to undergo surgery or have some form of cement placement in critical areas of the bone that may be causing a lot of pain. Every case is different, and I cannot comment on the specifics of your uncle. Even when pain is persistent, it tends to get better over time.

Q: What are some innovations in your field that really excite you?

A: I am particularly excited about the possibilities of immunotherapy. The use of CAR-T cell therapy and bispecific antibodies (antibodies made in the lab that combine two monoclonal antibodies in one drug), particularly in the earlier lines of therapy, hold the promise of improved outcomes.

Learn more

Learn more about multiple myeloma and multiple myeloma care at Mayo Clinic.

Find a clinical trial at Mayo Clinic.

Join the Blood Cancers and Disorders Support Group on Mayo Clinic Connect, an online community moderated by Mayo Clinic for patients and caregivers.

Also, read these articles:

• Research shows new treatment could delay cancer progression in patients with high-risk smoldering multiple myeloma
• Advances in multiple myeloma treatment
• Multiple myeloma: Its evolution, treatment and the quest to catch it early
• Hope, time and new options after CAR-T cell therapy for multiple myeloma
• Understanding CAR-T cell therapy and its potential side effects