Waldenstrom Macroglo­­bulinemia

Waldenstrom macroglobulinemia (also called lymphoplasmacytic lymphoma) starts in your bone marrow, filling it with abnormal blood cells that crowd out the normal ones. And it makes a large amount of a protein called immunoglobulin M (IgM or M protein). Too much of this protein can thicken your blood, so it doesn’t move easily through your body.

All of this can cause anemia, increased infections (with low white blood cells, a condition called neutropenia), bleeding and bruising (thrombocytopenia). It also can cause more serious complications like amyloidosis or cyroglobulinemia.

You may not have any symptoms — but signs of WM may show up in tests for another health condition. Or you may notice gradual signs of this condition, like night sweats, fatigue, loss of appetite, shortness of breath, blurred vision, nosebleeds, fever and swollen lymph nodes.

What to expect at your first visit

No matter what brought you to us, your treatment journey starts the moment you schedule your first visit. It’s natural to feel a bit anxious. That’s why your provider will start the appointment by getting to know you. They may ask:

• What brought you in today?
• Have you had any symptoms?
• If so, what are your symptoms?
• How long have you had these symptoms?
• Are the symptoms getting worse?
• How are the symptoms affecting your life?
• Have you been diagnosed with any other health conditions?
• Has anyone else in your family ever had cancer?

During your visit, you’ll also have a physical exam so your provider can look for signs of Waldenstrom macroglobulinemia or other similar conditions.  They’ll also order tests to help confirm a diagnosis.

Testing for Waldenstrom macroglobulinemia

You may have several tests to help us determine if you have WM or another health condition. These tests may include:

• Blood tests for cancer.
• Urine tests.
• CT scans.
• X-rays.
• Hemoglobin electrophoresis.
• Bone marrow biopsy.

Second opinions for Waldenstrom macroglobulinemia

Learning that you may have a rare blood cancer can be an emotional moment. And leave you with a lot of questions and concerns. But one thing is certain — you’ll want the best possible treatment and a team of trusted healthcare providers on your side.

At Cleveland Clinic, we encourage second opinions. And we always work to provide priority appointments for anyone looking for one. Our team of experts will dive in and work together to help you find the best, personalized treatment plan and give you the confidence to move forward with your care.

Meet Our Waldenstrom Macroglobulinemia Team

Cleveland Clinic believes in team-based care that focuses on your unique needs. This means you’ll have a care team of providers from many specialties confirming your diagnosis and planning your treatment, like:

• Oncologists.
• Hematologists.
• Pathologists.
• Radiologists.
• Nurse practitioners.
• Social workers.

After we get your test results, we’ll go over everything with you before you start treatment. We’ll talk about your options and ask you about your goals. We want to be sure your treatment is tailored not only to your diagnosis but also to your specific needs.

There are different ways to treat Waldenstrom macroglobulinemia symptoms. You may have only one treatment or a combination of them, like:

Watchful waiting

Early stage lymphoplasmacytic lymphoma often doesn’t need treatment. Instead, your providers may recommend “watchful waiting,” which means keeping an eye on your symptoms with regular blood work and follow-up appointments. This lets them see if the cancer is progressing or remaining unchanged. This may be all that’s needed for many years.

Other treatments

If you need treatment, you’ll likely be offered one or more options that attack or replace cancer cells in your blood. These treatments can ease or get rid of symptoms for months, or even years. You may have:

• Plasma exchange (plasmapheresis): Uses a machine to remove certain abnormal proteins from plasma in your blood and returns clean plasma to your bloodstream. This is mainly used to help improve the symptoms caused by the high immunoglobulin M.
• Chemotherapy: Uses medication to kill cancer cells.
• Immunotherapy: Uses your body’s immune system to destroy or slow cancer cell growth.
• Targeted therapy: Uses medications that target specific cell changes without harming healthy cells.
• Radiation therapy: Sends strong beams of energy to your body to destroy cancer cells.
• Bone marrow transplant: Also known as a stem cell transplant, it replaces your bone marrow with healthy donor bone marrow. This is a rare treatment for WM.

Taking the Next Step

It can be hard to hear you may have cancer, particularly if you don’t feel sick. When you get a Waldenstrom macroglobulinemia diagnosis, you don’t have to face making treatment decisions alone. At Cleveland Clinic, you’ll have an expert care team on your side — one that knows what it takes to manage chronic (lifelong) blood cancers. We’re here to help you feel better with the care that matches your changing needs.