Waldenström's macroglobulinemia is a type of lymphoma. It is a low-grade, or indolent, form of the cancer, meaning it spreads slowly and is usually controlled easily when diagnosed early.
This chronic form of lymphoma affects blood lymphocytes, a type of white blood cell. Waldenström's macroglobulinemia cancer cells are similar to cancer cells in multiple myeloma and non-Hodgkin lymphoma.
In Waldenström’s, the body produces too much of a protein called immunoglobulin M (IgM). When this protein builds up, the blood can become thick. This makes it difficult for the blood to move through the blood vessels.
Waldenström's macroglobulinemia cells can grow in the liver, spleen and lymph nodes, causing them to swell. They also can grow in the bone marrow, crowding out normal cells. When this happens, levels of red blood cells (which carry oxygen through the body) or white blood cells (which help the body fight infection) may fall. Levels of platelets, a type of blood cell needed to stop bleeding, also may fall.
According to the American Cancer Society, about six people per 1 million get the disease each year in this country. Between 1,000 and 1,500 people in the United States are diagnosed with Waldenström's macroglobulinemia annually. Waldenström's mainly strikes people age 65 and over. It is found most often in white men.
Waldenström’s macroglobulinemia risk factors
Anything that increases your chance of getting Waldenström’s macroglobulinemia cancer is a risk factor. Although Waldenström’s has no proven risk factors, certain things seem to make you more likely to develop it.
- Age: People over age 50 get Waldenström’s macroglobulinemia more often.
- Race: Waldenström’s is more common in white people.
- Gender: Men are more likely to develop Waldenström’s macroglobulinemia.
- Family history of Waldenström’s or another type of lymphoma
Not everyone with risk factors gets Waldenström’s. However, if you have risk factors, it’s a good idea to discuss them with your doctor.
Learn more about Waldenström’s macroglobulinemia:
Why choose MD Anderson for Waldenström's macroglobulinemia treatment?
Because MD Anderson's Lymphoma and Myeloma Center is one of the nation's most active programs, with a reputation as a leading center for lymphoma treatment, we have a remarkable level of expertise and experience with Waldenström's macroglobulinemia.
While many cancer doctors see only a couple of cases of this rare type of lymphoma during their entire careers, we treat hundreds each year. This experience is backed by a long history of developing treatments for lymphomas. And we are leading toward the future by investigating new ways to treat and diagnose Waldenström's, including targeted and biologic therapies that are available at a handful of places in this country.
Waldenström's macroglobulinemia is a chronic type of lymphoma that may be treated over an extended period of time. At MD Anderson, you are followed closely by a team of experts that includes physicians of several specialties, nurses, dietitians, social workers and many other specially trained support specialists. They collaborate closely and personalize your care to fit your unique situation.
We're here to meet our patients where they are and journey with them.
For James Noble (known as “J.R.”), the first signs of trouble came in October 2013.
At the end of each workday, the normally high-energy general manager began leaving his job at Pappadeaux exhausted.
“My dad didn’t come home with work stories anymore,” notes his daughter, Gloria. “Instead, he came home to rest. And that is not his style.”
Even so, J.R.’s daily fatigue didn’t set off any alarms initially. “At first, it seemed normal,” Gloria says. “People are allowed to be exhausted sometimes. But then it became chronic. It was startling.”
Persistent symptoms lead to Waldenström’s macroglobulinemia diagnosis
When J.R. began losing weight and experiencing back pain, too, he went to a doctor. There, he was diagnosed with anemia and began taking vitamins to boost his iron levels. But after nine months with no improvement, his doctor referred him to an oncologist, who performed a bone marrow biopsy. The cause of his chronic anemia was finally identified: Waldenström’s macroglobulinemia, a rare form of lymphoma.
The first person J.R. called after leaving the doctor’s office was his wife, Celeste.
“My immediate response was, ‘You’re going to MD Anderson. If you have cancer, that is the only place to be,’” she says. Celeste, who also works for Pappas Restaurants in their marketing department, got her husband an appointment at MD Anderson on the advice of her boss, Harris Pappas.
J.R.’s Waldenström’s macroglobulinemia treatment
At MD Anderson, J.R. began receiving a combination of Carlfizomib, Rituximab and Dexamethasone (a steroid medication) under the direction of Elisabet Manasanch, M.D., and Luis Fayad, M.D. The drugs were complemented with nutritional counseling and an exercise regime.
“His treatment has been rough, but successful,” Celeste says. “He has one more treatment and then a bone marrow biopsy. If everything goes according to plan, he will just be monitored from now on. His doctor described it as ‘partial remission.’”
A new appreciation of relationships
One thing J.R. — and his entire family— have taken away from his Waldenström’s macroglobulinemia journey is the importance of enjoying their time together.
“I feel much closer to my friends and family now,” J.R. says. “And time spent with them has become more valuable.”
“This experience has made us stronger and closer,” Celeste adds. “We appreciate each other more and cherish the times that we can all be together.”
“We love each other more openly, care more deeply and savor each moment,” Gloria says. “It has shaped us all for the better.”
Jessica Noble, who gave J.R. his first grandchild, said her father’s experience showed her the value of slowing down and being more present. “Life and time with family is truly is a gift,” she says, “and we should appreciate it.”
“Every moment is to be cherished,” adds Patrick Noble, J.R.’s son.
Pappas expands patient’s definition of ‘family’
J.R. is extremely grateful to the Pappas family for giving him the flexibility to work around his Waldenström’s macroglobulinemia treatment schedule.
But Pappas did more than just provide personal support. Pappas Restaurants also partnered with MD Anderson for the first time last year, raising money at 52 of their Houston restaurant locations to support cancer research at MD Anderson.
For J.R. and many of the other Pappas team, the effort to fundraise was deeply personal.
“Once the staff realized how many people were affected by cancer and that they could do something about it, it just took on a life of its own,” J.R. says.
In 2015, Pappas Restaurants raised more than $50,000, which was matched by the Pappas family. This year, the organization is hoping to double that amount, and J.R. is excited to share his story and be a part of that effort.
“At Pappas, our mission is to become a superior restaurant company through constant innovations, attention to detail and a focus on quality,” he says. “The mission of MD Anderson is simple and powerful: ending cancer. We are the leaders in our respective fields, and we will shape the future while achieving our goals. Together, we can end cancer!”
Pappas customers can contribute to this fundraising effort by making a donation of $1 or more at participating Pappas Restaurants locations across Texas between Sept. 12 and 25. Customers who dine at Pappas Bros. Steakhouse between Sept. 12 and Oct. 11 also can support this effort by purchasing a specialty dessert with a portion of proceeds supporting cancer research at MD Anderson.
