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Rare Disease Roadmap: Waldenstrom Macroglobulinemia

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.

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A Patient’s Journey with Waldenstrom Macroglobulinemia

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

Hematologist-Oncologist
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.
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
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 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

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?