Rare Disease Roadmap: Waldenstrom Macroglobulinemia

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Journey Overview

Navigate your Waldenstrom Macroglobulinemia health journey with confidence. Discover real patient and doctor perspectives, key specialists for your care team, doctor conversation starters, and more.

Journey Overview

A Patient’s Journey with Waldenstrom Macroglobulinemia

Stephen B

Stephen B.

Diagnosis (DX): Waldenstrom Macroglobulinemia (WM)

First Symptoms:

  • Fatigue (caused by anemia)
  • Fever and night sweats
  • Nosebleeds, bleeding gums
  • Rare type of non-Hodgkin lymphoma
  • Between 1,000 to 1,500 cases per year
  • Average age of diagnosis is 70 years
  • More common in men and Caucasians

Waldenstrom Macroglobulinemia: A Physician’s Perspective


Five answers from Dr. Vincent DeVita

Specialty: Hematologist specializing in waldenstrom macroglobulinemia (WM)

The disease is discovered during a routine exam or blood test. Also if anyone in your family has had WM, you should definitely tell your internist because first-degree relatives of someone who has been diagnosed with…
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Get to Know Your Care Team

  • hermatologist


    Treatment for Waldenstrom macroglobulinemia is different for every person. Typically, the diagnosis, staging, and treatment planning is overseen by a hematologist-oncologist, a medical doctor with specialized training in blood and bone marrow diseases, including non-Hodgkin’s lymphomas.

  • oncologist

    Medical Oncologist

    A medical oncologist specializes in the treatment of cancer with drugs, including chemotherapy, targeted therapy, and immunotherapy—systemic treatments that kill cancer cells throughout the body. Anti-cancer drugs are often used in the treatment of Waldenstrom macroglobulinemia.

  • radiation_oncologist

    Radiation Oncologist

    In some cases, a therapy called external beam radiation may be used to shrink an enlarged spleen or lymph nodes, or to treat bony lesions caused by Waldenstrom macroglobulinemia. This will be overseen by a radiation oncologist, a doctor who specializes in treating cancer with radiation.

  • Other Specialists & Providers

    Other Providers

    A person being treated for Waldenstrom macroglobulinemia may work with a variety of other healthcare providers who specialize in different aspects of care. These can include a nurse case manager, team coordinator, oncology social worker, registered dietitian, and oncology nurses and nurse practitioners.

The Conversation: Questions to Ask Your Cancer Care Team

woman and doctor

Living with a rare type of cancer like Waldenstrom macroglobulinemia can come with additional challenges. Use these questions to help guide your discussion with your cancer care team.

  • What are the most important things for me to know about my diagnosis?
  • What treatment do you currently recommend?
    • Why do you recommend this approach?
    • How does this treatment work?
    • What is the goal of this treatment?
  • If this approach to treatment doesn’t work, what are my other options?
  • What can I do to keep myself as healthy as possible? Is there anything I should avoid doing?
  • How will this affect my day-to-day life? (For example, work, exercise, and intimacy).
  • Are there other healthcare providers I should be working with?
  • Who can I talk to if I am concerned about the cost of treatment?
  • Are there clinical trials available for WM? Should I consider applying?
  • Can I have copies of my lab reports and pathology reports?
  • Where can I learn more about WM and how it is treated?
  • What new symptoms or changes in symptoms do I need to watch for? When do I need to call you? When do I need to seek emergency care?

Join the Social Conversation:

#waldenstrom #lymphomaawareness #lymsm #nonhodgkinlymphoma #raredisease