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NCI-Genetic Epidemiology Branch - Waldenstrom's Macroglobulinemia (WM)

To obtain clinical information about Waldenstrom’s Macroglobulinemia.

  • The National Cancer Institute (NCI) of the National Institutes of Health (NIH) is conducting a study to learn about WM and to determine what causes WM to sometimes develop in two or more family members
  • Participants will be asked to complete a questionnaire, give permission to obtain medical records and blood samples.

People diagnosed with WM at any early age (less than 35 years) or families with 2 or more members diagnosed with WM.

800-518-8474 http://dceg.cancer.gov/research/clinical-studies/blood-wm

Ibrutinib

Ibrutinib has been FDA-approved to treat:

  • Patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL).
  • Patients with chronic lymphocytic leukemia/small lymphocytic lymphoma (SLL) with 17p deletion.
  • Patients with Waldenström macroglobulinemia (WM).
  • Adult and pediatric patients age 1 year and older with chronic graft versus host disease (cGVHD) after failure of one or more lines of systemic therapy.

Zanubrutinib

Zanubrutinib is indicated for the treatment of adult patients with:

Identifying the oncogenic cooperation between IRF4 and MYD88l265p and their impact on the Tumor Microenvironment of Waldenstrom Macroglobulinemia

Although many patients with IgM MGUS remain asymptomatic, some of them progress to Waldenstrom Macroglobulinemia (WM) requiring treatment. Recently, we have found that the hereditable alteration of IRF4 gene increases the risk to develop WM, however little is known on the molecular mechanisms responsible for this feature. In this project, we aim to elucidate the role of the germline alteration of IRF4 in promoting WM through oncogenic cooperation with MYD88 and dysregulated immune microenvironment, ultimately paving the way for novel precision therapies for this patient population.
SH

Steven

I have a rare blood cancer. It is Waldenstrom macroglobulinemia (WM), a type of non-Hodgkin lymphoma (NHL), but some doctors say it has the same characteristics as POEMS syndrome.

I have very painful neuropathy, and it affects my legs and feet to the point that some days I cannot walk.

I have a spinal cord stimulator with the battery implanted in my back.

I am thankful to The Leukemia & Lymphoma Society (LLS) for my grants and all the other assistance, especially through this COVID pandemic.

LLS Team in Training

Bruce

In the fall of 2002, I had a missed call and a “call me when you’re out of class” text from my Dad. I was a sophomore at the University of Georgia when I heard, “Honey, I have cancer. Waldenstrom’s macroglobulinemia (WM).” So, I took a deep breath and asked, “Okay, so what’s next? Surgery? Radiation? Chemo?” “Nothing, we wait until it gets bad enough for treatment.”

Fely

Fely

Hello, my name is Fely Agustin, I am 38 years old and a mother to two teenagers. One is going to be a freshman in college and another a freshman in high school. I am married to a wonderful husband of almost 17 years. I was diagnosed on May 6, 2015 with Waldenstrom Macroglobulinemia (WM).

I traveled for work a lot when I started showing signs of what we thought was just a flu virus. I didn't think anything of it, until I noticed that I was running out of breath going from one terminal to another. Even older travelers were passing me by. I knew right then, something was not right.

Related Diseases

Myeloma shares some similar features and symptoms with other blood disorders, including:

Treatment for Indolent NHL Subtypes

Indolent non-Hodgkin lymphoma (NHL) subtypes progress slowly. They make up about 40 percent of all NHL cases in the United States. Indolent subtypes include:

NHL Subtypes

More than 60 specific NHL subtypes have been identified and assigned names by the World Health Organization (WHO). NHL subtypes are categorized by the characteristics of the lymphoma cells, including their appearance, the presence of proteins on the surface of the cells and their genetic features. It's important to know your subtype since it plays a large part in determining the type of treatment you'll receive. A hematopathologist, a doctor who specializes in the diagnosis of blood disorders and blood cancers, should review your biopsy specimens.

jaime WM

Jaime

My name is Jaime. I am married to my best friend, Brad, and we have three children, two daughters and a son. We also have a daughter and son in-law plus five beautiful grandchildren. I am very fortunate and count my blessings every day.

My cancer story started in April 2009.