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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.
Waldenström's macroglobulinemia is a type of lymphoma. 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. A low-grade, or indolent, lymphoma, it spreads slowly and usually is 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's 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.
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.
Did You Know?
In some cases, people can have Waldenström's macroglobulinemia for years without showing any symptoms. When signs appear, most are caused by low blood counts or thickened blood. Symptoms vary from person to person and may include:
- Stroke-like symptoms: Confusion, loss of coordination, dizziness
- Vision problems
- Excessive bleeding, nosebleeds, bleeding gums
- Unexplained weight loss, loss of appetite
- Heavy night sweats
- Swollen lymph nodes
- Swollen abdomen (belly)
- Frequent infections
- “Pins and needles” feeling or numbness in feet and legs
These symptoms do not always mean you have Waldenström's macroglobulinemia. However, it is important to discuss any symptoms with your doctor, since they may also signal other health problems.
Early and accurate diagnosis of Waldenström's macroglobulinemia helps you have the highest chance for successful treatment. However, the disease can be challenging to diagnose. It is important for a pathologist experienced in Waldenström's to read your test results.
Since our experts focus on lymphoma and see more patients than most cancer centers, they are among the most experienced in the country at recognizing Waldenström's macroglobulinemia. These specialists use the most advanced technology and techniques to pinpoint Waldenström's.
Waldenström's Macroglobulinemia Diagnostic Tests
If you have symptoms that may signal Waldenström's, your doctor will examine you and ask you questions about your health and your family medical history.
One or more of the following tests may be used to find out if you have Waldenström's and if it has spread. These tests also may be used to find out if treatment is working.
Lymph node biopsy: A small piece of tissue is removed from a lymph node and looked at with a microscope. Sometimes the entire node is removed.
Imaging tests, which may include:
- CT or CAT (computed axial tomography) scans
- PET (positron emission tomography) scans
- MRI (magnetic resonance imaging) scans
Blood and urine tests: Blood and urine tests are used to determine and follow levels of abnormal proteins produced by Waldenström's macroglobulinemia. In the blood, these proteins are called monoclonal proteins (M proteins) or paraproteins. They are measured by a test called serum protein electrophoresis (SPEP). In the urine, these proteins are known as Bence Jones proteins. They are measured by a urine protein electrophoresis (UPEP) on a 24-hour sample of urine. An additional test, called an immunofixation (IFE) may help find small traces of abnormal proteins in either the blood or urine.
Bone marrow aspiration and biopsy
Waldenström's Macroglobulinemia Staging
Staging is a system of classifying specific cancers by how much disease is in the body and where it has spread when it is diagnosed. Such a system does not exist for Waldenström's macroglobulinemia.
However, using the International Prognostic Scoring System for Waldenström's, experts look at certain factors that may help predict outcomes. Some situations may mean a patient does not do as well. These include:
- Age more than 65
- Hemoglobin level less than 11.5
- Platelet count 100 or less
- Beta-2-microglobulin more than 3 mg/L
- Monoclonal IgM level more than 7 g/dL
In scoring Waldenström's macroglobulinemia, doctors give each of the above factors a single point. Then they assign a patient to a certain group:
- Low risk: Younger than 65 with no more than one point
- Intermediate risk: 65 or older and/or have two points
- High risk: At least three points
Getting a Second Opinion at MD Anderson
The pathologists at MD Anderson are highly specialized in diagnosing and staging Waldenström's macroglobulinemia. We welcome the opportunity to provide second opinions for Waldenström's.
Because Waldenström's macroglobulinemia is a slow-growing, chronic type of lymphoma, you may need care for an extended time. Your treatment may include a series of several therapies.
Working together and with you, our team of experts painstakingly plans your treatment, utilizing the most advanced and effective treatments, as well as therapies that help with side effects of the disease and treatment. Many times we are able to offer clinical trials (research studies) of new treatments for Waldenström's.
Our Waldenström's Macroglobulinemia Treatments
If you are diagnosed with Waldenström's, your doctor will discuss the best options to treat it. This depends on several factors, including the extent of the disease and your general health.
Your treatment for Waldenström's macroglobulinemia will be customized to your particular needs. One or more of the following therapies may be recommended to treat the cancer or help relieve symptoms.
Chemotherapy: This often is the most effective treatment, and a combination of drugs usually is used. MD Anderson offers the most up-to-date and effective chemotherapy options for Waldenström's.
Radiation therapy: New radiation therapy techniques and remarkable skill allow MD Anderson doctors to target Waldenström's macroglobulinemia tumors more precisely, delivering the maximum amount of radiation with the least damage to healthy cells.
Immunotherapy: On the cutting edge of new treatments, immunotherapies to treat Waldenström's may include:
- Monoclonal antibodies, including Rituxan® (rituximab)
- Biological therapies that develop antibodies that destroy tumor cells
- Proteasome inhibitors, such as Velcade® (bortezomib)
- Immune modulators, such as thalidomide and lenalidomide, that modify the environment of the tumor cell and allow it to die
- Targeted therapies that attack cancer cells by using small molecules to block pathways cells us to survive and multiply
Stem cell transplantation: If Waldenström's macroglobulinemia does not respond to chemotherapy or if it returns, a stem cell transplant may be recommended. MD Anderson's stem cell transplantation program is among the most active and advanced in the nation.
Plasma exchange: If you develop symptoms because your blood is too thick, plasma can be removed and replaced with normal plasma from a healthy donor. This quickly relieves the symptoms until chemotherapy or immunotherapy can destroy the Waldenström's cells that are causing the buildup of abnormal protein.
Watchful waiting: Your doctor carefully monitors the disease and your symptoms, suggesting treatment if needed.
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.