Questions to ask: Multiple myeloma

Diagnosis

• Do I have MGUS, smoldering myeloma, or active multiple myeloma?
• Which CRAB signs of damage, if any, do I have?
• What is my stage (ISS, R-ISS, or R2-ISS), and what does it mean for me?
• What did the FISH test on my bone marrow show? Is my myeloma standard risk or high risk?
• What type of M-protein or light chain do I have, and which blood test will you use to follow it?
• Which imaging scan did I have, and did it show any bone damage?
• How are my kidneys doing? Is there anything I should do to protect them?
• If I have smoldering myeloma, am I high risk? Should I be treated, watched, or join a trial?
• Should I see a myeloma specialist or a center with transplant and CAR-T programs?
• Is there a clinical trial I should think about now?
• What should my family and caregivers know about this diagnosis?

Before

• Which drugs are in my first treatment, and why this combination for me?
• Am I a candidate for a stem cell transplant? If so, when would it happen, and could I delay it?
• Should my stem cells be collected and saved even if I do not have a transplant now?
• How is each drug given (pill, shot, or IV), and how often do I need to come in?
• What side effects are most likely, and which ones should I call about right away?
• Do I need a blood thinner or aspirin to prevent blood clots?
• Which medicines will I take to prevent infections, and which vaccines do I need?
• Should I see a dentist before starting a bone-strengthening drug?
• Will treatment affect my ability to work, drive, or care for others?
• How much will treatment cost, and who can help with insurance and pill costs?
• How can my caregiver help, and what should they watch for?

During

• How is my M-protein or light chain level changing?
• What is my response so far (partial, very good partial, or complete)?
• When will you check MRD, and what would the result change?
• Is my numbness or tingling a reason to change the dose or schedule?
• Are my blood counts safe for the next treatment?
• How long will I stay on maintenance, and what happens if I have side effects from it?
• Can I take my other medicines, supplements, or pain pills with this treatment?
• What exercise is safe for my bones?
• If my myeloma comes back, what would the next options be?
• Would CAR-T or a bispecific antibody make sense for me later, and when should I be referred?
• Who do I call after hours, and when should I go to the emergency room?

After

• How often will I need blood tests, and which results mean the myeloma is coming back?
• How long should I stay on a bone-strengthening drug?
• What long-term side effects should I watch for, including second cancers?
• Do I need new vaccines after my stem cell transplant or CAR-T?
• If I had CAR-T, how long should I stay near the treatment center and avoid driving?
• What can I do to stay as strong and healthy as possible?
• Are there support groups or counseling for me and my family?
• Should my close relatives be checked for MGUS?
• If the myeloma returns, what is the plan?

Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.