Just diagnosed with Multiple Myeloma — what should I do first

First Steps After a Multiple Myeloma Diagnosis

I'm sorry you've received this diagnosis. It's normal to feel overwhelmed right now, but there are clear, important steps you can take to get the best care possible.

IMMEDIATE PRIORITIES

1. Ensure You Have Complete Diagnostic Testing

According to the NCCN Guidelines for Patients, you'll need several tests to fully understand your myeloma before treatment begins. These tests help your care team determine:

• How advanced your myeloma is
• Which treatment will work best for you
• Your overall health status

Key tests typically include:

• Blood tests (CBC, immunoglobulin levels, M protein levels, free light chain assay, blood chemistry)
• Urine tests (to check for myeloma proteins and kidney function)
• Bone marrow biopsy (to confirm diagnosis and check for genetic abnormalities)
• Imaging (PET/CT scan, low-dose CT, or MRI to see where myeloma is in your body)

Ask your doctor: "Have all the recommended diagnostic tests been completed? Do I have results from all of them?"

2. Get a Second Opinion from a Myeloma Specialist

The NCCN Guidelines emphasize this strongly: Seek out a myeloma specialist if you can. Treatment decisions made early on seriously affect your later options. Most people with myeloma have time for a second opinion—use that time. A specialist has more experience diagnosing and treating this specific disease.

3. Understand Your Specific Myeloma Type

Ask your doctor about:

• Your M protein type (IgG, IgA, IgM, etc. and kappa or lambda)
• Genetic abnormalities found in your myeloma cells (FISH results)
• Risk category (standard risk vs. high risk)

These details matter because they guide treatment selection.

BEFORE TREATMENT STARTS

4. Discuss Transplant Eligibility

According to NCCN Guidelines, your care team will assess whether you're a candidate for a hematopoietic cell transplant (also called a stem cell transplant or bone marrow transplant). This is often an important part of myeloma treatment, especially for younger or healthier patients.

Ask your doctor: "Am I a candidate for a hematopoietic cell transplant? What factors will you consider?"

5. Understand Your Treatment Options

The NCCN Guidelines describe several primary treatment approaches for active myeloma. Your specific treatment will depend on:

• Whether you'll have a transplant
• Your overall health and fitness level
• Your myeloma's aggressiveness
• Your personal goals and preferences

Know that treatment typically involves multi-drug combinations (usually 3-4 medications together), which may include:

• A targeted therapy (like proteasome inhibitors)
• An immunomodulator
• A monoclonal antibody
• A corticosteroid

PRACTICAL STEPS

6. Build Your Care Team

• Find an oncologist experienced with myeloma
• Consider seeing a myeloma specialist at a major cancer center
• Ask about support services (social work, nutrition, mental health)
• Bring a trusted person to appointments to help take notes

7. **Organize Your [ID removed]

• Request copies of all test results and pathology reports
• Keep a folder with imaging results and lab values
• Write down questions before each appointment

8. Ask These Key Questions at Your First Appointment

According to the NCCN Guidelines, important questions include:

• "What type of myeloma do I have, and what do my genetic test results mean?"
• "What is my risk category, and what does that mean for my treatment?"
• "What are my treatment options, and which do you recommend for me?"
• "Will I be a candidate for a hematopoietic cell transplant?"
• "What are the benefits and risks of each treatment option?"
• "How often will I need follow-up tests during treatment?"
• "What side effects should I expect, and how will we manage them?"
• "Can I get a second opinion from another myeloma specialist?"

IMPORTANT CONTEXT

Here's what the NCCN Guidelines want you to know: While multiple myeloma cannot currently be cured, new treatments are giving people more hope and more years to live than ever before. For many people, myeloma is becoming a chronic condition they learn to live with rather than a disease they die from. Treatment can keep myeloma under control and reduce or stop symptoms for a long period of time.

You have an important role in your care. According to NCCN Guidelines, you're more likely to get the care you want by asking questions and making shared decisions with your care team. Many people feel more satisfied, confident, and less anxious when they play an active role in their care.

WHAT NOT TO DO

• Don't rush into treatment before all tests are complete
• Don't skip the second opinion step
• Don't hesitate to ask questions that feel uncomfortable
• Don't make decisions alone—involve your care team in shared decision-making

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