On this page: Some words on symptoms you may encounter, how the disease is diagnosed, risk factors for the disease, and the relationship between WM and Deep Vein Thrombosis.

Waldenstrom’s Macroglobulinemia often develops over a long period of time (years), and some people have no symptoms at all.

However, most people will gradually develop symptoms of WM for two main reasons:

The abnormal cells are filling up the bone marrow or collecting in the lymph nodes or spleen.

Large amounts of IgM are circulating in the bloodstream or targeting tissue and nerves.

When they do occur, signs and symptoms may include:

  • Easy bruising

  • Bleeding from the nose or the gums

  • Fatigue

  • Night sweats

  • Weight loss

  • Fever

  • Numbness, burning, or tingling in your feet or hands

  • Headache

  • Shortness of breath

  • Changes in vision

  • Confusion

  • Enlarged Lymph nodes

  • Low hemoglobin

  • Frequent colds, infections, or pneumonias

Diagnosis

Tests and procedures used to diagnose Waldenstrom’s macroglobulinemia include:

Blood tests

Blood tests may reveal low numbers of healthy blood cells. Also, blood tests are used to detect the IgM proteins produced by the cancer cells.

Blood tests may also measure your organ function, which can tell your doctor whether the IgM proteins are affecting your organs, such as your kidneys and your liver.

Collecting a sample of bone marrow for testing.

During a bone marrow biopsy, your doctor uses a needle to extract some of your bone marrow from your hipbone. The sample is examined to look for cancer cells. If any are detected, advanced laboratory analysis can help your doctor understand the cancer cells’ characteristics, including their genetic mutations.

Imaging tests

Imaging tests can help your doctor determine whether cancer has spread to other areas of your body. Imaging tests may include computerized tomography (CT) scans or positron emission tomography (PET) scans.

Risk Factors

Being older

Waldenstrom’s macroglobulinemia can occur at any age, but it’s most often diagnosed in adults 65 and older.

Being male

Males are more likely to be diagnosed with Waldenstrom’s macroglobulinemia.

Being white

White people are more likely to develop the disease, compared with people of other races.

Having a family history of lymphoma

If you have a relative who has been diagnosed with Waldenstrom’s macroglobulinemia or another type of B-cell lymphoma, you may have an increased risk.

Regarding WM and Deep Vein Thrombosis (DVT)

What is the condition? Deep Vein Thrombosis (DVT) is a blockage of a deep (and therefore large) vein, typically in the legs, by a blood clot.  The most common life-threatening concern with DVT is the potential for a clot to break up or detach from the vein, to travel through the heart, and then to become lodged in a pulmonary artery that supplies blood to the lungs.  This is called a Pulmonary Embolism (PE), and can be fatal.
Who is at risk? A diagnosis of WM (and that of many other cancers) increases the risk of a DVT.  See https://onlinelibrary.wiley.com/doi/full/10.1111/jth.12724 for a paper studying the frequency of DVTs in WM patients.  It concludes that the risks are significantly higher in the first years following diagnosis, and can still be somewhat higher up to 10 years after diagnosis.  Treatments, especially those involving chemotherapy, can further increase the risk.
What symptoms should the WM (or any!) patient watch out for? The typical symptoms of a DVT are pain, swelling, and redness of the leg.  The pain may be perceived as a muscle cramp.  The symptoms of a Pulmonary Embolism (PE) can include the sudden onset of shortness of breath or chest pain, and more seriously coughing up blood, and fainting.
Diagnosis An ECG will not show a DVD or PE (it only shows electrical flows within the heart).  A lung clot is often too soft to show on an X-ray, so a CT scan is needed.  A “D-Dimer” blood test detects small proteins produced as a blood clot degrades; a negative test practically rules out the presence of a DVT.  When you are presenting yourself to a medical professional because of symptoms as described above, you may want to say “I have WM (a form of blood cancer), which puts me at higher risk of having DVT; would a D-Dimer test make sense for me?”.
Preventative Measures Several measures are recommended for preventing blood clots: performing leg exercises while sitting down for long periods of time, taking a break from a sitting position and walking around, having an active lifestyle, and maintaining a healthy body weight.  The first two of these recommendations are particularly important during airplane travel.  Generally the seats are cramped which reduces blood flow in the legs.  Many people wear graduated pressure stockings when they fly.  And booking an aisle seat can make it easier to get up and move around, especially on transoceanic trips.

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