How We Treat Waldenström's Macroglobulinemia

Our Unique Approach

Your care team at the Bing Center for Waldenström's Macroglobulinemia (WM) includes experts with specialized knowledge in treating various forms of Waldenstrőm's. We care for more than 1,000 patients a year. With more than 20 years of experience focused on WM, our experts are skilled in creating a carefully timed care plan that works for each patient, minimizing side effects and enhancing your quality of life. You will receive the most advanced treatments, including access to clinical trials. Many of these therapies were developed by scientists in our own laboratories.

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Steven Treon, MD, PhD, director, Bing Center for Waldenström's Macroglobulinemia

Multidisciplinary Team

Your care team includes physicians, hematologists/oncologists, physician assistants, nurse practitioners, nurses, laboratory investigators, clinical care coordinators, clinical social workers, and nutritionists working closely together to decide what kind of treatment – if any is needed – will work best at each stage.

Our Waldenström's Tumor Board meets weekly to discuss every case. These specialists review your care plan to reach a consensus recommendation, which we share with you. Your team ensures that your care plan offers the best possible outcomes, and that all your needs are met.

Personalized Treatment

As a highly specialized Center, we focus on the distinct needs of people with Waldenström's. We provide a very personalized approach to your care and tailor your therapy to keep your quality of life at the center of the treatment plan.

A distinguishing area of our expertise is treating adults over 60 years, who often have different needs from younger adults. For example, they may have a higher risk for heart disease, diabetes, or kidney problems, which influence the choice of treatment options. To address the specific needs of these patients, we offer clinical trials specifically for adults age 60 and over.

Our physician-scientists' investigations into the genetic role of Waldenström's are paving the way for treatment approaches based on personalized medicine. We have many Waldenström's-related clinical trials currently underway testing novel, targeted drugs.

We view every patient as an individual, with unique needs and expectations. We involve you and your family in each step of the treatment process. As you go through treatment, you will have access to a wide range of resources – from nutritional services to integrative therapies – to support you and your family.

Treatments for Waldenström's

Your care will combine the finest treatments currently available for Waldenström's with innovative new therapies based on research discovered in our laboratories. For newly diagnosed patients and for patients whose disease has relapsed, your care team will carefully consider every approach, including clinical trials evaluating new therapies.

Certain factors affect your treatment options:

  • Your age.
  • Your general health.
  • Your levels of Immunoglobulin M (IgM), low blood counts, the need for disease control, whether you have low-risk disease or high-risk disease, and the chance of associated health problems.
  • Genetic mutations associated with your disease.
  • Your lifestyle and goals.
  • We make every effort to ensure that the potential side effects from your therapy impact your life, hobbies, work, and interests as little as possible. Certain treatments may also heighten the risk of contracting secondary leukemia in the future. We carefully factor this into treatment plans, especially for younger patients.

Treatment Approaches Can Include:

Watchful Waiting

If you are asymptomatic or have smoldering Waldenstrom's Macroglobulinemia (SWM) or Monoclonal Gammopathy of Undetermined Significance (MGUS), you may not need treatment right away and can be monitored regularly for disease progression. The main reason to consider watchful waiting is to avoid the side effects of treatment.

Initial Treatment Approaches for WM

When treatment is needed, we consider your primary symptoms related to WM, the genomics of your WM cells, and your physical health.

Our standard, non-clinical trial options may include chemo-immunotherapy using bendamustine and rituximab, or targeted therapies such as a BTK-inhibitor like ibrutinib or zanubrutinib.

For patients presenting with WM-related amyloidosis, large lymph nodes, or spleen or with a mass, or with peripheral or central nervous system disease, we will customize treatment to address the specific needs of the patient.

As WM is incurable with current treatments, we will consider clinical trial options for your care. We view treatment as a partnership and will inform you and your caregiver of the available treatment options, and will discuss possible benefits and risks.

Clinical Trials Questions?

877-338-7425

Approach to the WM Patient with Relapsed or Refractory Disease

In some cases, the initial treatment for WM does not work. This is called refractory disease. In addition, most patients will require additional treatment when they experience relapse after a remission. This is called relapsed disease. Relapses can occur years or even decades later and vary greatly. Fortunately, there are a large and growing number of effective treatment options available. Clinical trial options for refractory or relapsed WM disease are usually available. Your care team will discuss which approach is most appropriate for you. Treatment decisions will consider the type of treatment you received in the past, the success of prior treatments, side effects that you have experienced, genomic mutations in your WM cells, and your preferences for treatment.

Once treatment starts for relapsed disease, you will be monitored closely to evaluate the treatment's effectiveness. Adjustments are made to improve its effectiveness and how well you tolerate therapy. In some cases, therapy could be stopped, and you may be observed without treatment.

Breakthrough Research Informs Breakthrough Treatments

Our scientists are working to understand the genetic basis and pathogenesis of WM and are developing therapies. By establishing a registry with thousands of patients and their family members, our program has gained important insights into the genetic basis of the disease. These insights have also helped to establish the importance of certain signaling pathways that permit survival of WM cells, or cause resistance to drug therapies. These scientific advances inform clinical trials that lead to the development and adoption of many treatments for WM, including the approval of BTK-inhibitors for WM.

New Directions in Treatment

Some of the new agents being tested in our Center's clinical trials include covalent (ibrutinib, zanubrutinib, acalabrutinib) and non-covalent (pirtobrutinib) BTK-inhibitors, BTK-degraders, BCL-2 inhibitors (venetoclax), CXCR4 inhibitors (ulocuplumab, mavorixafor) and immune-based therapies that include antibodies conjugated to payloads that kill tumor cells, and bi-specific antibodies that stimulate immune T-cells to kill WM cells. Combination studies using these agents are also being investigated.

Second Opinions

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Offering Expertise Through Second Opinions

  • We believe there is value in patients with suspected or diagnosed Waldenström's receiving a second opinion.
  • We routinely evaluate specimens sent to us from outside centers. These specimens are evaluated by our entire team, including our expert hematopathologists.

Waldenstrőm's can be difficult to diagnose and properly treat. Reasons to consider a second opinion include:

  • To confirm your diagnosis.
  • If you have received a diagnosis and want to be treated at Dana-Farber Brigham Cancer Center.
  • To determine the optimal therapy, and whether any is needed at this time.
  • To learn more about your cancer from specialists who are world leaders in this disease, and who have treated hundreds of other patients like you.
  • To learn if you're eligible for a clinical trial.

Phone: 877-442-3324
Online: Complete the Appointment Request Form

If you cannot travel to Boston in person, you can take advantage of our Online Second Opinion service.

For Referring Physicians

Because you, the referring physician, are an integral part of your patient's care team, we are committed to collaborating with you to provide the best care for your patient.

If you are a physician and have a patient with diagnosed or suspected Waldenström's, we look forward to working with you. Learn how to refer a patient.