This is the fourth part of our series about the condition based on our patient booklet “Fast Facts for Patients: Waldenström Macroglobulinemia”. This blog post details who is in your care team as well as which tests will you need to have.

Who Is in My Care Team?

Your care team will be led by a hematologist-oncologist, a doctor with expertise in diagnosing and treating diseases and cancers of the blood. Some hematologists treat many different kinds of blood diseases, while others specialize in blood and bone marrow cancers. If ever you feel unsure of what is being offered or why, think about getting a second opinion. It is important to feel comfortable with the options that have been recommended and to have a good understanding of what is going to happen.

Depending on your symptoms, you may be seen by other specialist doctors, such as an ophthalmologist (eyes), neurologist (nerves) and cardiologist (heart specialist).

The clinical team is also supported by:

  • pathologists, who analyze bone marrow and other tissue biopsies to confirm the diagnosis,
  • radiologists, who analyze scans of your body.

You may also have specialist nurses in your clinical team (in the UK, you will be allocated a clinical nurse specialist). They provide support for your health, emotional and social needs and have experience of overseeing chemotherapy and other treatments.

What Tests Will I Need to Have?

Your doctor will ask about your symptoms and general health, any medication you are taking and any allergies you have.

You will be examined to assess your overall health and to look for any signs of abnormal swellings or enlarged organs.

If the doctor is concerned about high blood viscosity, they may examine the back of your eyes (retinas) with an ophthalmoscope.

Examination of the back of the eyes (retinas) with an ophthalmoscope

They will also examine your skin for bruising and signs of color change when cold.

If you have symptoms of a neuropathy (nerve damage), the hematologist may carry out a brief neurological examination. You may also be referred to a neurologist for specialist assessment and may have electrical studies called nerve conduction tests.

Blood Tests

Blood samples will be taken for different tests.

  • Complete or full blood count: measures different types of cells in the blood.
  • Metabolic panel: measures different chemicals to assess the health of your kidneys, liver and bones.
  • Immunoglobulin tests: detect excessive production of immunoglobulin (Ig) and identify IgM paraprotein. They also measure levels of IgA and IgG as these are sometimes low in WM, making sinus and bronchial infections more likely.
  • Beta-2 microglobulin: used in scoring systems for prognosis and may help predict how you will respond to treatment.
  • Lactate dehydrogenase: also used in scoring systems for prognosis.
  • Serum or plasma viscosity: used if hyperviscosity is suspected. The viscosity of water is 1 centipoise (cp). Normal serum viscosity is 1.4–1.8 cp. Symptoms of hyperviscosity can appear with a serum viscosity as low as 3 cp, but they usually occur when it is above 4–5 cp.

Serum protein electrophoresis showing the amount of different proteins in the blood (normal blood vs. person with Waldenström macroglobulinemia)

Bone Marrow Biopsy

As WM is a disease of the bone marrow, it is essential to take a sample of the marrow to confirm that LPL cells are present, how many there are and how much normally functioning bone marrow remains. This procedure is called a bone marrow biopsy. The samples are usually taken from the back of your hip bone (pelvis).

Bone marrow biopsy

You will be given an injection of local anesthetic to numb the area. The doctor or nurse will then pass a needle through the skin into the bone and draw a small sample of liquid marrow into a syringe (bone marrow aspirate). After this, they will take a small core of marrow from the bone – this is called a trephine biopsy. Both samples are examined under a microscope.

The sample can be taken on the ward or in the outpatient department, and the procedure takes 15–20 minutes. You do not need to fast beforehand. It may be uncomfortable or briefly painful, but this should only last for a few seconds. You may be offered a mild sedative before the procedure or gas and air while having the procedure.

A small dressing or plaster is placed on the skin after the procedure, and you can move around straight afterward. Any tenderness usually settles in a day or two and you can take mild painkillers if you need to.

In the laboratory, a pathologist will look at the stained smear of bone marrow cells under the microscope. Liquid marrow is also extracted for flow cytometry, which sorts cell groups according to patterns of receptors on their surface.

It may take 7–10 days to get the results because of the processing involved. There may be information on genetic abnormalities, too. The presence of genetic changes may affect your response to treatment.

Scans

Computed Tomography (CT) Scan

X-ray cross-section images are taken as the body moves through the scanner. A computer combines these to produce detailed pictures. The process involves lying still for 30–45 minutes.

Computed tomography (CT) scan

You may be asked to fast for 4 hours before your appointment. Before the scan, you may be given a drink or an injection into your arm. This puts a contrast medium into your body, which allows areas to be seen more clearly. You may feel a hot sensation for a few minutes afterward. If you have kidney problems, you probably will not have contrast as it can affect the kidneys.

Positron Emission Tomography Combined with CT Scanning (PET-CT)

Glucose with a radioactive tracer is injected into a vein and a CT scan can follow the path it takes in the body. PET-CT can provide useful information if high-grade transformation is suspected. If you have diabetes, it is important that your blood sugar is well controlled at the time of the scan.

Magnetic Resonance Imaging (MRI)

A scan that uses strong magnetic fields and radio waves to produce 3D images of your internal organs. It may be performed to investigate Bing–Neel syndrome or peripheral neuropathy. You may be moved into the scanner head first or feet first, depending on the part of your body being scanned.

 

Information based on Fast Facts for Patients: Waldenström Macroglobulinemia (Karger, 2022).

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