Hearing you have a rare blood cancer can be an unnerving surprise.
Especially if you haven’t had symptoms. This is often the case with slow-growing Waldenstrom macroglobulinemia (WM) — also called lymphoplasmacytic lymphoma. It quietly starts in abnormal, cancerous white blood cells called B-cells (B-lymphocytes) that accumulate in your bone marrow (the spongy center of your bones that makes blood cells). When you notice symptoms, it’s a sign that the cancer has progressed, and you’ll likely need treatment.
That’s why it’s important to have healthcare providers you trust on your side. Ones who are familiar with this rare cancer — like the experts at Cleveland Clinic. Our highly skilled and experienced specialists listen carefully, answer your questions and help you feel confident to move forward with treatment.
Rare blood cancers like Waldenstrom macroglobulinemia aren’t uncommon for our rare blood cancers team. We stay at the leading edge of Waldenstrom macroglobulinemia care and are among a select few programs nationwide delivering comprehensive WM care with advanced testing and treatment that focuses on you.
Every part of your treatment is personalized to your unique diagnosis and needs — including your care team. Providers from different specialties work together to help you get the best results. They meet weekly to look at test results and talk about your progress. Meet our team.
Having Waldenstrom macroglobulinemia can change your life, even if symptoms are mild. Our social workers, counselors and care coordinators are here to help you understand what’s going on and support you throughout diagnosis, treatment and beyond.
When you don’t feel well, getting to your healthcare provider’s office for an appointment can feel like a lot. It’s OK. Virtual visits are a convenient way to get the same great care from your provider but from the comfort of your own home. All you need is an internet connection and a smartphone, computer or tablet.
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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.
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:
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.
You may have several tests to help us determine if you have WM or another health condition. These tests may include:
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.
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:
Our healthcare providers see patients at the following locations in Ohio and Florida.
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:
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.
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:
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.
Getting an appointment with Cleveland Clinic’s Waldenstrom macroglobulinemia experts is easy. We’re here to help you get care.
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