Waldenstrom macroglobulinemia (WM) is a rare form of blood cancer that causes too much 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.
Every year, around 1,000 to 1,500 people in the United States receive diagnoses with WM, according to the American Cancer Society. On average, people typically receive their WM diagnosis at the age of 70.
Although there’s no current cure for WM, there are treatments that can help manage its symptoms.
If you’ve been given a WM diagnosis, here’s what 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 WM, these cells create large amounts of immunoglobulin M (IgM), an antibody used to fight off disease.
Too much IgM can thicken 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. You may also experience bleeding and bruising if your platelets drop.
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 patient’s outlook.
In some cases, especially when first diagnosed, WM causes no symptoms. Other times, people with WM may experience symptoms like:
- weight loss
- swollen lymph nodes
- night sweats
Increasing levels of IgM may result in more severe symptoms like hyperviscosity syndrome, which can cause:
- poor brain circulation
- heart and kidney problems
- sensitivity to cold
- poor digestion
Although WM has no current cure, 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 recommend the best treatment for you. Below are some ways WM is treated.
A variety of chemotherapy drugs can treat WM. Some are injected into the body, while others are taken orally. Chemotherapy can help destroy cancer cells that produce too much IgM.
Newer drugs aimed at addressing the changes inside 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
- mTOR inhibitors
- Bruton tyrosine kinase inhibitors
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 (synthetic versions of natural antibodies)
- immunomodulating drugs
If you have hyperviscosity syndrome as a result of WM, you may need plasmapheresis right away.
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.
The outlook for people with WM has improved in recent decades.
Based on the most recent data collected from 2001 to 2010, the median survival after starting treatment is 8 years, compared with 6 years in the decade prior, according to the American Cancer Society.
The International Waldenstrom’s Macroglobulinemia Foundation has found that improved treatments have put median survival rates between 14 and 16 years.
Median survival is defined as the length of time at which 50 percent of people with the disease have died while the rest are still living.
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 outlook.
According to the American Cancer Society, the 5-year survival rates are:
- 87 percent for low-risk group
- 68 percent for intermediate-risk group
- 36 percent for high-risk group
While survival rates take into account data from large numbers of people with a specific disease, they don’t predict individual outcomes.
Keep in mind that these survival rates are based on outcomes from people who were 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 to your doctor to get an individualized assessment of your outlook based on your overall health, potential for your cancer to respond to treatment, and other factors.
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 for you.