Understanding Waldenström macroglobulinemia Archives

Transcript:

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:

Fatigue

Unintended weight loss

Fever

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:

Chemotherapy

Targeted therapies such as proteasome inhibitors, BTK inhibitors and BCL2 antagonists;

Immunotherapy

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.

Understanding Waldenström Macroglobulinemia and How It Progresses from Patient Empowerment Network on Vimeo.

Dr. Jorge Castillo of Dana-Farber Cancer Institute provides an overview of Waldenström macroglobulinemia (WM) and how the condition presents and progresses.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

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Transcript:

Katherine:

Let’s start with the very basic. What is Waldenstrom macroglobulinemia?

Dr. Castillo:

Yeah, Waldenstrom’s macro – it’s a mouthful.

Katherine:

It is.

Dr. Castillo:

I can just call it WM for ease.

It is a blood cancer, and in this blood cancer, the malignant cells are nesting in the bone marrow. And not only that. These malignant cells kind of secrete, produce, a protein called IgM.

IgM is an antibody that should be protecting us from infections, and in a normal state, we all have a little bit of IgM, and that’s a good thing. But in these patients, with these malignant cells, as these cells accumulate in the marrow, they actually increase the levels of IgM in our patients, and that can translate into a number of different symptoms, which we will probably talk about later.

Katherine:

Yes. How is it staged?

Dr. Castillo:

So, the staging is a very interesting aspect. So, when we think about cancer, we think about stage I is in one spot, stage II in another spot, stage III, right, and it gets more extensive as we go along. That doesn’t really apply to Waldenstrom’s. Waldenstrom’s is a whole-body disease right from the start. The main reason for that is because it’s a disease of the bone marrow, and we all have bone marrow in all our bones, from our skull all the way to the great toe, so if you were to get a sample from each bone space, we would find the malignant cells there. So, this is a disease that is a whole-body disease right from the start, so therefore, there’s no stage I, II, or III. That is just the way we envision this.

Katherine:

How does the condition progress?

Dr. Castillo:

So, it’s interesting because a number of the patients that we see in my clinic are actually asymptomatic at the time of the presentation. I would say maybe about a third of the patients I see in my clinic that were diagnosed with this disease for other reasons. They either had an abnormal laboratory value or an abnormal imaging study or some other reason. And when they come, they are worked up. Initially, they are found to have these malignant cells and these IgM elevation, but they have no other problems whatsoever.

So, I would say most patients will be asymptomatic at the beginning of the disease, and probably they will be asymptomatic for years before the symptoms actually do start. So, what happens is the malignant cells start taking over the bone marrow space, and it reaches a point in which the bone marrow, the healthy bone marrow, doesn’t have space to produce the normal cells that they should produce.

So, the first things that we tend to see in these patients is anemia, so the hemoglobin level starts dropping.

The red cells are the first ones that are being affected by this process so that the anemia is being seen first. If we leave that for a long time, then the other blood cells will decrease also, the white blood cells and the platelets over time. But the first one is almost always the anemia. And obviously, that, patients feel tired. They feel short of breath. They feel fatigued and all of that.

Now, the IgM itself can cause other problems on their own. If they have there’s too much IgM, they can actually make the blood a little thick, and that can cause a little bit of problems with the circulation, specifically in the eyes, for example. Some patients have blurred vision. Some patients have nosebleeds or headaches, right, with all that hyperviscosity, which means the blood is too thick. In some other patients, we have nerve damage. You know, they can have numbness in their toes, and then that increases into the – progresses, extends into the feet, into the shins, into the knees and then the fingers.

And so, that happens over years sometimes. Some patients can have enlargement of lymph nodes in their necks and in the axillary areas or in the inguinal areas, or even enlargement of organs, the spleen and liver and things like that. So, when we think about the clinical manifestations of Waldenstrom’s, it varies, very diverse. But I would say most patients would have anemia. I think that’s probably the most important aspect of it.

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