Waldenstrom macroglobulinemia (WM) is a rare form of blood cancer that results in too many abnormal white blood cells, known as lymphoplasmacytic cells, in the bone marrow.
Also known as Waldenstrom’s disease, WM is considered a type of lymphoplasmacytic lymphoma, or slow-growing non-Hodgkin’s lymphoma.
Research shows that once a person becomes ill, the probability of progression to noticeable symptoms may be about
Although there’s no current cure for WM, there are treatments that can help you manage its symptoms.
If you’ve been given a WM diagnosis, here’s what you need to know about the survival rates and outlook as you navigate the next steps.
WM starts in the lymphocytes or B cells. These cancer cells are called lymphoplasmacytoids. They’re similar to the cancer cells in multiple myeloma and non-Hodgkin’s lymphoma.
In some cases, especially when first diagnosed, WM causes no symptoms. Other times, people with WM may experience symptoms such as:
- weight loss
- swollen lymph nodes
- night sweats
In WM, these cells create large amounts of immunoglobulin M (IgM), an antibody used to fight off disease.
Too much IgM can thicken the blood and create a condition called hyperviscosity, which can affect the organs’ and tissues’ ability to function properly.
This hyperviscosity can lead to common symptoms of WM, including:
- vision problems
- loss of coordination
- shortness of breath
- excessive bleeding
The cells affected by WM mainly grow in bone marrow, which makes it difficult for the body to produce other healthy blood cells. Your red blood cell count may decrease, creating a condition called anemia. Anemia can cause fatigue and weakness.
The cancer cells may also cause a shortage of white blood cells, potentially making you more vulnerable to infections. If your platelets drop, you may also experience bleeding and bruising.
Unlike other types of cancer, WM has no standard staging system. The extent of the disease is a factor when determining treatment or evaluating a person’s outlook.
Increasing levels of IgM may result in more severe symptoms such as hyperviscosity syndrome, which can cause:
- poor brain circulation
- heart and kidney problems
- sensitivity to cold
- poor digestion
Although WM has no cure at the moment, there are various treatments that can help manage its symptoms. You may not need treatment if you don’t have any symptoms.
Your doctor will evaluate the severity of your symptoms to determine the best treatment for you. Below are some ways WM is treated.
Chemotherapy can help destroy cancer cells that produce too much IgM.
A variety of chemotherapy drugs can treat WM. Some are injected into the body, while others are taken orally.
- alkylating agents such as cyclophosphamide (Cytoxan)
- purine analogs such as fludarabine (Fludara)
- corticosteroids such as prednisone
Newer drugs aimed at addressing the changes inside the cancer cells are called targeted therapy. These drugs can be used when chemotherapy doesn’t work.
Targeted therapy often has less severe side effects. Targeted therapy for WM may include:
- proteasome inhibitors, such as bortezomib (Velcade) and carfilzomib (Kyprolis)
- mTOR inhibitors such as everolimus (Afinitor) and temsirolimus (Torisel)
- Bruton tyrosine kinase inhibitors such as ibrutinib (Imbruvica) and zanubrutinib (Brukinsa)
Immunotherapy boosts your immune system to potentially slow the growth of WM cells or destroy them altogether.
Immunotherapy may include the use of:
- monoclonal antibodies, which are synthetic versions of natural antibodies
- immunomodulating drugs
If you have hyperviscosity syndrome due to WM, you may need plasmapheresis immediately.
This treatment involves using a machine to remove plasma with abnormal proteins from the body to lower your IgM level.
Other treatments may be available as well, depending on your specific condition. Your doctor will advise on the best option for you.
Your outlook will depend on the rate at which your disease is progressing. Doctors can use the International Prognostic Scoring System for Waldenstrom Macroglobulinemia (ISSWM) to help predict your outlook based on risk factors such as:
- blood hemoglobin level
- platelet count
- beta-2 microglobulin level
- monoclonal IgM level
These factors are scored to put people with WM into three risk groups: low, intermediate, and high. This helps doctors choose treatments and assess individual outlooks.
According to the
- 87% for low risk groups
- 68% for intermediate risk groups
- 36% for high risk groups
While survival rates take into account data from large numbers of people with a specific disease, they don’t predict individual outcomes.
Remember that these survival rates are based on outcomes from people treated at least 5 years ago. New advancements in treatments may have improved the outlook for people with WM since this data was collected.
Talk with your doctor to get an individualized assessment of your outlook based on your overall health, the potential for your cancer to respond to treatment, and other factors.
What are the end stages of Waldenstrom macroglobulinemia?
WM doesn’t have a standard staging system. Doctors usually look at the person’s age, symptoms, blood work, and other factors to determine the level of progression.
How long can I live with Waldenstrom macroglobulinemia?
The outlook for people with WM has improved in recent decades. According to NCI, the overall relative 5-year survival is about
Is Waldenstrom a form of leukemia?
WM is a type of non-Hodgkin’s lymphoma.
While there’s no current cure for WM, treatments can help manage your symptoms and improve your outlook. You may not even need treatment for several years after being diagnosed with the disease.
Work with your doctor to monitor the progression of your cancer and determine the best course of action.