What should you or your loved ones know following a Waldenström macroglobulinemia (WM) diagnosis? This animated video reviews symptoms of WM, current treatment options and provides key advice for becoming a proactive WM patient.
Waldenström macroglobulinemia, also called Waldenström or WM, is a rare, slow-growing type of non-Hodgkin lymphoma that starts in a person’s white blood cells. Healthy blood cells are crowded out when the bone marrow produces too many malignant white blood cells, and these produce an excess of a protein called immunoglobulin M or IgM.
Waldenström can cause symptoms that may include:
- Unintended weight loss
- Swollen lymph nodes
- Enlarged spleen
- Unexplained bleeding
- And numbness in the hands or feet, which is called peripheral neuropathy
It’s important to note that not all patients with Waldenström have symptoms when they are diagnosed, and so those patients won’t need treatment immediately. Instead, they are put on an approach called “watchful waiting” or “active surveillance.” This means patients are monitored regularly for indicators that it is time to begin treatment – such as the onset of symptoms.
So, how is Waldenström typically treated?
Every patient is different. When making treatment decisions, factors such as the extent of disease and symptoms can impact available options. And potential side effects, a patient’s age, health, and lifestyle are also taken into consideration.
The good news is that there are several treatment options for Waldenström, including:
- Targeted therapies such as proteasome inhibitors, BTK inhibitors and BCL2 antagonists;
- And, clinical trials, which study emerging treatments for Waldenström. It’s important to ask your doctor if there is a trial that may be right for you.
Less commonly used treatments for Waldenström are stem cell transplant and radiation.
In the case of hyperviscosity or other IgM-related symptoms, plasmapheresis, also known as plasma exchange, may be used as a temporary measure to manage the issue.
Now that you understand more about Waldenström, how can you take an active role in your care?
- First, continue to educate yourself about your condition.
- Understand the goals of treatment and ask whether a clinical trial might be right for you.
- It also important to consider a second opinion or consult with a specialist following a diagnosis.
- And, write down your questions before and during your appointments. Visit powerfulpatients.org/wm to access office visit planners to help you organize your thoughts.
- Bring one or more friends or loved ones to your appointments to help you recall information and to keep track of important details.
- Finally, remember that you have a voice in your care. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate.
To learn more about Waldenström macroglobulinemia and to access tools for self-advocacy, visit powerfulpatients.org/WM.