Questions to ask: Waldenström macroglobulinemia

Diagnosis

• Do I have IgM MGUS, smoldering Waldenström, or Waldenström that needs treatment?
• What is my IgM level, and how thick is my blood?
• Do I need an eye exam to check for signs of thick blood?
• Did my bone marrow test show the MYD88 or CXCR4 gene changes? What does that mean for me?
• What is my risk group, and what does it mean?
• Is my numbness or tingling caused by the IgM protein?
• Do I have any related problems, like cryoglobulins, cold agglutinin disease, or amyloidosis?
• Do I need treatment now, or can we watch and wait?
• How often will I need blood tests and visits?
• Should I see a doctor who treats many people with Waldenström?
• Should my close relatives be checked?

Before

• Why are you recommending this treatment for me?
• Should I take daily pills for a long time, or have a treatment with a set end date? What are the trade-offs?
• Do I need plasma exchange before I start?
• Could my IgM rise for a short time with rituximab, and how will you watch for that?
• What side effects are most likely, and which ones should I call about right away?
• Do I need heart tests before starting a BTK inhibitor?
• Which of my current medicines, supplements, or foods could interact with my treatment?
• Do I need a hepatitis B test or medicine to prevent infections?
• Which vaccines should I get before starting?
• How will treatment affect my work and daily life?
• How much will this cost, and who can help with insurance and pill costs?

During

• How is my IgM level changing, and is my hemoglobin going up?
• Is my treatment working as well as you hoped?
• Is my heart rhythm and blood pressure okay on this pill?
• Should I stop my pill before surgery or dental work, and for how long?
• Is my numbness or tingling getting better or worse?
• Are my blood counts safe for the next treatment?
• Can a dose change help with my side effects?
• Who do I call after hours, and when should I go to the emergency room?
• If this treatment stops working, what would we try next?
• Is there a clinical trial I should think about?

After

• How often will I need blood tests now?
• What signs would mean the Waldenström is coming back?
• Do I need any vaccines now that treatment is finished?
• What long-term side effects should I watch for?
• Should I tell hospitals I have Waldenström before a blood transfusion?
• How can I lower my risk of infections?
• What can I do to stay strong and healthy?
• Are there support groups for people with Waldenström and their families?
• If it comes back, could the same treatment work again?

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.