If you have any signs or symptoms that worry you, make an appointment with your doctor.

If you are diagnosed with Waldenstrom’s macroglobulinemia, you will likely be referred to a doctor who specializes in treating blood and bone marrow disorders (hematologist) or a doctor who specializes in treating cancer (oncologist).

Because appointments can be brief and because there is often a lot of ground to cover, it is a good idea to be well-prepared.  It is important to mention all your symptoms to the doctor, especially if symptoms are changing or getting worse over time.

Here is some information to help you get ready and know what to expect from your doctor.

Some medical terms:

Peripheral Neuropathy

Sometimes, the large amounts of IgM in your bloodstream can damage the nerves in the body’s extremities, causing numbness or tingling in hands and feet, or problems with balance.

Hyperviscosity

This is when your blood becomes thicker and more slow-flowing than normal due to large amounts of IgM in your bloodstream.  It affects up to 30% of people with WM. Hyperviscosity can cause changes in the back of the eyes, due to pressure in the retinal blood vessels, as well as shortness of breath, nosebleeds, blurred vision and dizziness.

Autoimmunity

Autoimmunity is a condition in which the patient’s body turns against healthy cells and body constituents.  WM patients are more prone to autoimmunity than others.  Examples are hemolytic anemia, caused by antibodies destroying the patient’s red blood cells.  Immune Thrombocytopenia is the destruction of platelets by antibodies.  Fortunately, there are excellent treatments available.  Less well known to hematologists who are not familiar with WM is cold weather causing autoimmune reactions leading to blood thickening or gelling, and subsequent bleeding (commonly nasal bleeds) and poor circulation in the extremities (Cold Agglutinin Disease (CAD)).  Not all circulation problems in WM are caused by hyperviscosity.

What you can do:

  • Note symptoms you’re experiencing.

    If you have had signs and symptoms of illness or are just not feeling well, write down those details before your appointment. Your doctor will also want to know when you first noticed these symptoms and whether they’ve changed over time.

  • Make a list of your medications.

    Include any prescription or over-the-counter medications you’re taking, as well as all vitamins, supplements and herbal remedies.

  • Take a family member or friend along.

    Sometimes it can be difficult to remember all the information provided during an appointment. Someone who accompanies you may take notes or remember something that you missed or forgot.

  • Write down questions to ask your doctor.

    It is best to carry a notebook with you to all appointments. Record any question for the Doctor in advance. It is suggested that your caregiver records the answers, giving you time to think about the Doctor’s responses.

  • Keep careful notes:

    Each WM patient will have unique signs and symptoms. It is incumbent of the patient and/or caregiver to keep careful records of your tests and meetings with your Doctor and copies of your medical reports and procedures

  • Research:

    Because the disease is indolent, there quite often is no rush to treat, so, there usually is time to do research to make sure the diagnosis is correct and that your treatment makes sense. Educate yourself through WMFC Ed forums, webinars and this website under Education.

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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.

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