What questions should I ask my oncologist about locally advanced Multiple Myeloma

Questions to Ask Your Oncologist About Locally Advanced Multiple Myeloma

Based on the NCCN Guidelines for Patients with Multiple Myeloma, here are the most important questions to help you understand your diagnosis and treatment plan:

Understanding Your Specific Diagnosis

1. "What tests have been done to determine my myeloma stage and risk level?"

• Why this matters: According to NCCN Guidelines, doctors use specific genetic tests (called FISH testing) to look for abnormal changes in your myeloma cells' chromosomes. These changes help determine whether your myeloma is standard risk or high risk, which directly affects treatment recommendations.

2. "Do I have any high-risk genetic features, and what do they mean for my treatment?"

• Your doctor should explain findings like:
  • Deletions (missing pieces) of chromosome 17
  • Translocations (swapped pieces between chromosomes 4 and 14, or 14 and 16)
  • Extra copies of chromosome 1
  • These features help predict how aggressively your myeloma might progress

3. "What is my M protein level, and what does it tell us?"

• M proteins are abnormal antibodies your myeloma cells produce. Tracking these levels helps measure your tumor burden (the amount of cancer in your body) and shows how well treatment is working.

About Your Treatment Plan

4. "Am I a candidate for a hematopoietic cell transplant, and when would that happen?"

• According to NCCN Guidelines, a blood stem cell transplant is often an important part of myeloma treatment. Your doctor will consider factors like your overall health, organ function, and fitness level. If you're eligible, stem cells are typically collected after 4-6 cycles of initial treatment.

5. "What is the preferred treatment combination for my specific situation?"

• NCCN Guidelines recommend multi-drug therapy (usually 3-4 medications) as first-line treatment. This typically includes:
  • A targeted therapy (like a proteasome inhibitor)
  • An immunomodulator (like lenalidomide)
  • A monoclonal antibody (like daratumumab)
  • A corticosteroid
• Ask which combination your doctor recommends and why it's best for YOUR myeloma.

6. "What are the goals of my treatment, and how will we measure success?"

• Treatment goals might include achieving remission (where signs and symptoms decrease or disappear), controlling symptoms, or extending survival. Ask how your doctor will monitor progress—usually through blood tests measuring M protein levels and imaging scans.

About Side Effects and Supportive Care

7. "What side effects should I expect, and how will we manage them?"

• Common side effects of myeloma treatments include fatigue, nausea, low blood cell counts, and nerve damage (neuropathy). Ask your team:
  • Which side effects are most likely with YOUR specific drugs?
  • What can be done to prevent or manage them?
  • When should you call the doctor about side effects?

8. "Will I need bone-building therapy?"

• NCCN Guidelines recommend bone-building treatments (bisphosphonates or denosumab) for most myeloma patients because myeloma commonly weakens bones. Ask if this is part of your plan.

9. "What supportive care will I receive?"

• This might include radiation therapy for bone pain, blood thinners if needed, or other treatments to manage symptoms.

About Monitoring and Follow-Up

10. "How often will I have follow-up tests, and what will they include?"

• According to NCCN Guidelines, follow-up tests typically include:
  • Blood tests (CBC, metabolic panel, M protein levels, free light chain assay)
  • Urine tests (to check for myeloma proteins)
  • Imaging (PET/CT, low-dose CT, or MRI scans)
• Ask about the schedule and what each test shows.

11. "What happens if my myeloma doesn't respond to treatment or comes back?"

• NCCN Guidelines note that myeloma often requires additional treatment over time. Ask about:
  • What "progression" or "relapse" means
  • What treatment options exist if your current therapy stops working
  • Whether CAR T-cell therapy or other newer treatments might be options later

About Your Care Team

12. "Should I see a myeloma specialist?"

• NCCN Guidelines strongly recommend seeking care from specialists experienced in treating multiple myeloma. Ask if your current oncologist is a myeloma specialist, or if a referral would be helpful.

13. "Is getting a second opinion recommended?"

• According to NCCN Guidelines, getting a second opinion from another myeloma specialist is normal and encouraged. Treatment decisions made early on can affect your options later, so this is worth the time investment.

Questions About Your Individual Situation

14. "Based on my age, overall health, and other medical conditions, what treatment approach makes the most sense?"

• Your doctor should explain how YOUR specific circumstances (not just the myeloma itself) influence treatment choices.

15. "Are there clinical trials I should consider?"

• Ask about research studies that might offer newer treatment options, especially if standard treatments aren't working well.

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Key Takeaway

According to NCCN Guidelines, "Cancer care is not the same for everyone. By following expert recommendations for your situation, you are more likely to improve your care and have better outcomes as a result."

The goal of these questions is to help you understand YOUR specific myeloma, YOUR treatment plan, and how to work as a partner with your care team. Don't hesitate to ask your doctor to explain anything you don't understand—good communication leads to better care.

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