What questions should I ask my oncologist about Multiple Myeloma

Important Questions to Ask Your Multiple Myeloma Oncologist

Based on the NCCN Guidelines for Patients: Multiple Myeloma, here are essential questions organized by topic to help you understand your care and make informed decisions:

About Your Diagnosis & Disease Stage

• What is my specific myeloma type? (Ask about your M protein subtype—IgG, IgA, etc.—and whether you have light chain myeloma)
• What stage is my myeloma, and what does that mean for my treatment?
• What genetic abnormalities (chromosomal changes) were found in my myeloma cells? (This helps determine if your myeloma is standard-risk or high-risk)
• Do I have any of the high-risk features like deletion of chromosome 17, translocation between chromosomes 4 and 14, or TP53 mutations?

About Your Test Results

• Which tests will I need, and how often? (Blood tests, urine tests, bone marrow biopsy, imaging scans)
• What do my M protein levels mean, and how will you monitor them during treatment?
• Will my biopsy tissue be saved for additional testing if needed?
• Can I get a second opinion, and will my tissue samples be sent to another facility if I request it?

About Treatment Options

• What is my primary treatment plan, and why do you recommend this specific combination?
• Will I be a candidate for a hematopoietic cell transplant (blood stem cell transplant)? (This is often a major part of myeloma treatment)
• If a transplant is an option, when would it happen in my treatment plan?
• What are the preferred multi-drug combinations you're considering for me?
• What are the benefits and risks of each treatment option?

About Specific Medications

• What drugs will I be taking, and how do they work? (For example: proteasome inhibitors, immunomodulators, monoclonal antibodies, corticosteroids)
• What are the common side effects I should expect?
• How will you manage side effects if they occur?
• Are there any medications I should avoid while on treatment?

About Bone Health & Supportive Care

• Will I receive bone-building therapy? (The NCCN Guidelines recommend bisphosphonates or denosumab for most myeloma patients)
• What supportive care will I receive to manage symptoms? (Pain management, infection prevention, blood clot prevention if needed)
• Should I be concerned about bone fractures, and what can I do to prevent them?

About Monitoring & Response

• How will you know if my treatment is working? (What tests will show treatment response?)
• How often will I have follow-up tests?
• What does "remission" mean for myeloma, and is that a realistic goal for me?
• What happens if my myeloma doesn't respond to the first treatment, or if it comes back?

About Maintenance Therapy

• If my myeloma responds well to initial treatment, will I need maintenance therapy? (Lower-dose medication to keep the disease controlled)
• What are the benefits and risks of maintenance therapy?
• How long would I stay on maintenance therapy?

About Your Care Team & Second Opinions

• Do you specialize in myeloma treatment? (According to NCCN Guidelines, seeing a myeloma specialist can significantly affect treatment decisions and outcomes)
• Is there time for me to get a second opinion before starting treatment?
• Can you recommend a myeloma specialist if you're not one?
• What cancer center or hospital do you work with, and do they have experience treating multiple myeloma?

About Clinical Trials

• Are there clinical trials available for my specific situation?
• Would a clinical trial be appropriate for me at any point in my treatment?
• How would a trial affect my other treatment options?

About Your Goals & Quality of Life

• What are realistic expectations for how long I can control my myeloma?
• How will treatment affect my daily life and quality of life?
• What should I do to take care of myself during treatment?
• Are there support resources available (counseling, support groups, financial assistance)?

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Why These Questions Matter

According to the NCCN Guidelines, you have an important role in your care. Asking questions and making shared decisions with your care team leads to better outcomes. The guidelines emphasize that:

• Treatment is not the same for everyone—your specific situation matters
• Multiple treatment options exist, and your doctor will help determine which is best for you
• Myeloma usually comes back at some point, so understanding your treatment plan and follow-up care is essential
• Being your own advocate by asking questions—even ones you're afraid to ask—helps ensure you make the best decisions for your situation

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Before Your Appointment

Consider:

• Writing down your questions in advance so you don't forget them
• Bringing a trusted family member or friend to take notes and help you remember information
• Asking for written summaries of your diagnosis, treatment plan, and test results
• **Requesting copies of all your [ID removed] for your files

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.