"It's causing my body to be pretty severely anemic, and I feel it."

By Colleen Murphy
July 15, 2021
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Country singer Ashley Monroe has revealed that she has been diagnosed with Waldenstrom macroglobulinemia (WM), a rare blood cancer, and will be starting chemotherapy for it today. The 34-year-old made the announcement in an Instagram post yesterday.

Ashley-Monroe-Cancer-GettyImages-1091966066
Credit: Getty Images

"A few months ago my [doctor] was doing some routine lab work and found that I was anemic. I was like, FINE, I'll just double up on cheeseburger patties, take some extra vitamins and call it a day," she wrote in the caption. "Well my red blood count just kept falling, and they found out my iron /b12/ folic acid numbers were actually fine. short story long, they did a bone marrow biopsy (ouch), and VOILA...a rare kind of blood c word called 'waldenstrom macroglobulinemia.' It's causing my body to be pretty severely anemic, and I feel it."

The singer-songwriter went on to share that she will be undergoing chemotherapy. "Seems like such a negative thing to say. Until I flip that doom feeling on its head and think, wow, I'm thankful I have an illness that is VERY live with-able. I'm thankful there IS a treatment that actually works to fight what is causing harm to my body," she wrote. "THANKFUL for friends and family who have gathered around me praying and sending flowers and letting me lean on them during this super weird chapter of my life. Thankful for my angel son. Who I am fighting for the most."

As Monroe begins her treatment process for WM, here is what you should know about the rare type of blood cancer.

What is Waldenstrom macroglobulinemia?

WM is a type of non-Hodgkin lymphoma, a cancer that starts in white blood cells called lymphocytes, according to the American Cancer Society (ACS).

With WM—which is sometimes referred to as lymphoplasmacytic lymphoma or Waldenstrom's—the bone marrow produces too many abnormal white blood cells, crowding out healthy blood cells. This can lead to a low red blood cell level (aka anemia), something Monroe experienced and that can make you feel tired and weak. WM can also cause low levels of white blood cells, making it hard for the body to fight infection, the ACS reports.

The abnormal white blood cells brought on by WM also produce a protein that builds up in the blood, hampers circulation, and causes many of the cancer's symptoms, according to the Mayo Clinic.

What are the symptoms of Waldenstrom macroglobulinemia?

Because WM grows slowly, it may not cause signs and symptoms for many years, per the Mayo Clinic. However, when they do appear, the signs and symptoms can include:

A common first sign of WM is swollen lymph nodes (aka lymphadenopathy), Catherine Diefenbach, MD, director of Clinical Lymphoma at NYU Langone Health's Perlmutter Cancer Center, tells Health.

Because lymphoma cells can also grow in the liver and spleen, these organs may become affected, swelling and leading to abdominal pain, according to the ACS.

Who's at risk for Waldenstrom macroglobulinemia?

Again, WM is rare. In fact, there are about three cases per million people per year in the US, the ACS reports. That means that about 1,000 to 1,500 people are diagnosed with the cancer each year in the US.

The fact that Monroe was diagnosed with the cancer at 34-years-old makes her case even rarer. That's because there are few cases of WM in younger people, the ACS says, with the average age at diagnosis being 70.

Besides being older than 65, the Mayo Clinic lists being male, being white, and having a family history of lymphoma as other risk factors for WM.

Some research has also shown a potential link between having chronic hepatitis C infection and certain types of autoimmune diseases, like Sjögren syndrome, and an increased risk for WM, but the ACS points out that not all studies have found this to be true.

How is Waldenstrom macroglobulinemia diagnosed?

"WM is often found when a person goes to see their doctor because of symptoms they are having, or because they just don't feel well and go in for a checkup," according to the ACS. "Sometimes it's found in people without symptoms when they have blood tests done for some other reason."

In fact, up to 25% of patients aren't experiencing any symptoms at the time of their diagnosis, according to Dr. Diefenbach.

If WM is suspected, the provider will run diagnostic tests—the two key ones being tests that look for abnormal proteins in the blood and abnormal cells in the bone marrow. If blood tests suggest possible WM, a biopsy needs to be done for confirmation. The bone marrow samples are usually taken from the back of the hip bone. If WM is diagnosed after the biopsy, the provider may run imaging tests to see what parts of the body the cancer has affected.

How is Waldenstrom macroglobulinemia treated?

Not everyone with WM needs to be treated right away. "For patients who are asymptomatic and do not have significant laboratory abnormalities, there is no data showing that treating when the patient is well and without symptoms will improve survival," Dr. Diefenbach says. "Thus treatment is limited to patients who are symptomatic, have a significant disease burden, or significant laboratory abnormalities."  

If treatment is immediately or eventually needed, there are two main ways to do it: chemotherapy and/or different types of biological therapies (aka immunotherapy). For young patients, stem cell transplant may be an option—and one that may provide long-term disease control, according to Dr. Diefenbach.

But as Dr. Diefenbach points out, WM is not curable with conventional therapy. Instead, "most people with WM are treated for some time, followed by a break, and then treated again when the disease comes back," according to the ACS.

What is the prognosis of Waldenstrom macroglobulinemia?

Based on data from people who were diagnosed with WM between 2001 and 2010, people with the cancer are, on average, about 78% as likely as people who don't have WM to live for at least five years after being diagnosed, according to the National Cancer Institute. That's the five-year survival rate. You can also consider median survival, which is the length of time at which half of the patients are still alive and half have died. For most patients treated nowadays, the median overall survival is more than 10 years, Dr. Diefenbach says. And since most patients are elderly at the time of a WM diagnosis, WM is often not the cause of death.

"These numbers can't tell you how long you will live, but they may help give you a better understanding about how likely it is that your treatment will be successful," according to the ACS.

People who survive WM are also at an increased risk of developing certain other cancers, including acute myeloid leukemia, diffuse large B-cell lymphoma, thyroid cancer, and melanoma, per the ACS.

As her treatment journey begins, Monroe made it clear why she decided to open up about her experience, writing: "I would greatly appreciate if no one gave me any unsolicited advice or medical opinions. I've done my research and have amazing Vanderbilt [doctors] I've weighed every option with. That's why I was hesitant to post about it, but I could use the prayers.. and I DO believe in the power of prayer guys. I also believe in the power of love healing us all on an even deeper level. I love you all big. Here I go 💪🏼🙏❤️."

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