where do waldenstrom's patients go for medical treatment

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What is Waldenstrom’s disease (WM)?

Also known as Waldenstrom’s disease, WM is considered a type of lymphoplasmacytic lymphoma, or slow-growing non-Hodgkin’s lymphoma. Every year, around 1,000 to 1,500 people in the United States receive diagnoses with WM, according to the American Cancer Society.

How are systemic therapies used to treat Waldenstrom macroglobulinemia?

Common ways to give systemic therapies include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally). The types of systemic therapies used for Waldenstrom macroglobulinemia include:

What kind of doctors treat Waldenstrom macroglobulinemia?

Cancer care teams include a variety of other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, and others. Descriptions of the common types of treatments used for Waldenstrom macroglobulinemia are listed below.

Can people with Waldenstrom macroglobulinemia get other cancers?

People who’ve had WM can still get other cancers. In fact, WM survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Waldenstrom Macroglobulinemia. Some amount of feeling depressed, anxious, or worried is normal when WM is a part of your life.

Who treats Waldenstrom macroglobulinemia?

If you're diagnosed with Waldenstrom macroglobulinemia, you'll likely be referred to a doctor who specializes in treating blood and bone marrow disorders (hematologist) or a doctor who specializes in treating cancer (oncologist).

How do you manage Waldenstrom's macroglobulinemia?

The treatment of WM has evolved rapidly, with treatment options that include anti-CD20 monoclonal antibody-based combinations and BTK inhibitors. The choice of therapy is based on the need for rapid disease control, presence of specific disease complications, and patient's age.

Can Waldenstroms go into remission?

Can Waldenstrom macroglobulinemia go into remission? There's a small chance that WM can go into remission, but it's not typical. Doctors have only seen complete remission of the disease in a few people. Current treatments do not prevent relapse.

Is Waldenstrom cancer terminal?

The International Waldenstrom's Macroglobulinemia Foundation has found that improved treatments have put median survival rates between 14 and 16 years. Median survival is defined as the length of time at which 50 percent of people with the disease have died while the rest are still living.

What is new in the treatment of Waldenstrom macroglobulinemia?

Bortezomib, dexamethasone, and rituximab recently have been shown to be an active combination to treat Waldenstrom macroglobulinemia.

What are the end stages of Waldenstrom's?

Staging/Prognostic Scoring System for Waldenstrom Macroglobulinemia/Lymphoplasmacytic LymphomaScoreStage3-year WM-related mortality1Low10%2Intermediate14%3High38%4-5Very high48%1 more row•Dec 21, 2020

How quickly does Waldenstrom's progress?

The cumulative probability of progression to symptomatic WM, amyloidosis, or lymphoma was 6% at 1 year, 39% at 3 years, 59% at 5 years, and 68% at 10 years. The major risk factors for progression were percentage of lymphoplasmacytic cells in the bone marrow, size of the serum M-spike, and the hemoglobin value.

Is Waldenstrom's painful?

Neuropathy: In some people with WM, the abnormal antibody can attack and damage nerves outside the brain. This can lead to numbness or a painful “pins and needles” sensation in the feet and legs, which is called neuropathy.

Can Waldenstrom be misdiagnosed?

Waldenström's can be mistaken for multiple myeloma or indolent lymphoma, both of which are also B-cell malignancies. About 5 to 10 percent of patients who come to our center have been misdiagnosed. The most accurate way to diagnose Waldenström's is by a bone marrow biopsy.

Can Waldenstrom's turn into multiple myeloma?

Certain changes in the DNA inside normal lymphocytes can cause them to become lymphoma or multiple myeloma cells. Changes in the DNA of some lymphoma cells can also cause them to produce high levels of IgM, leading to symptoms of Waldenstrom's.

How long can you live with Waldenstrom's macroglobulinemia?

According to the International Waldenstrom's Macroglobulinemia Foundation (IWMF), half of the people diagnosed with this type of cancer are seen to survive for approximately 14 to 16 years.

Is Waldenstrom a form of leukemia?

Waldenstrom macroglobulinemia is considered a type of non-Hodgkin's lymphoma. It's sometimes called lymphoplasmacytic lymphoma.

Is Waldenstrom’s disease curable?

There's currently no cure for Waldenstrom's disease, but there are treatments available to help manage it, often for long periods of time.

Is Waldenstrom’s disease chronic?

Yes, Waldenstrom's disease is chronic. It's a rare form of non-Hodgkin's lymphoma.

What are the late stages of Waldenstrom’s disease?

There's no standardized staging system for Waldenstrom's disease. When determining a person's prognosis and disease severity, doctors look at multi...

How long can someone live with Waldenstrom’s?

According to data from the American Cancer Society collected between 2001 and 2010, people who have Waldenstrom's disease have an overall median su...

What is the best treatment for WM?

Some of the drugs and combinations that might be used as the first treatment for WM include: 1 Ibrutinib, with or without rituximab 2 Bendamustine, with or without rituximab 3 Bortezomib, with or without dexamethasone and/or rituximab 4 Chlorambucil 5 Cladribine, with or without rituximab 6 Cyclophosphamide, doxorubicin, vincristine, prednisone, and rituximab (CHOP-R) 7 Cyclophosphamide, prednisone, and rituximab (CPR) 8 Fludarabine, with or without rituximab 9 Fludarabine, cyclophosphamide, and rituximab (FCR) 10 Rituximab 11 Rituximab, cyclophosphamide, and dexamethasone (RCD) 12 Thalidomide, with or without rituximab

How long does it take for WM to go down?

In most people with WM, the disease will respond to treatment (IgM levels will go down and symptoms will get better) within a few months, although this may take longer in people getting only rituximab . If the WM responds, options include close monitoring for signs of disease progression or giving rituximab on a regular schedule to help keep the disease in check.

Why not give chemo for stem cell transplant?

If a stem cell transplant might be used later on, many experts recommend not giving certain chemo drugs (chlorambucil, bendamustine, cladribine, or fludarabine) because they might affect the blood stem cells in the bone marrow.

Why do you need plasmapheresis right away?

Doctors agree that hyperviscosity syndrome is a reason to treat with plasmapheresis right away, because it can be life threatening. Other reasons to start treatment include problems from amyloidosis or cryoglobulins, as well as anemia (too few red blood cells), kidney or heart problems, nerve damage, or any severe symptom from the WM.

What happens if a drug doesn't work?

If the first drug or set of drugs doesn’t work, other drugs may be helpful. Most people with WM will require treatment with different drugs at some point. Often, a certain drug or combination of drugs will work at first, but over time it might stop working.

Can you take WM with chemotherapy?

Some doctors like to combine drugs (often some type of chemotherapy plus rituximab), while others prefer to start with a single drug. The patient’s age, overall health, and symptoms can also affect which treatments are recommended.

Can WM be treated?

Many different medicines can help keep WM under control, often for long periods of time. Not everyone with WM needs treatment right away. In fact, some people are diagnosed with WM before they even have symptoms from it. Most experts recommend that people with WM should not usually be treated until the disease is causing problems.

What is the FDA approved drug for Waldenström?

In 2015, ibrutinib (Imbruvica) was the first therapy approved by the U.S. Food and Drug Administration (FDA) specifically for patients with Waldenström macroglobulinemia. There are many other drugs that can be used to manage this disease, alone and/or in various combinations, including the following:

What is the first treatment for Waldenström macroglobulinemia?

Physicians often combine plasmapheresis with other more definitive treatments, such as chemotherapy. In 2015, ibrutinib (Imbruvica) was the first therapy approved by the U.S. Food and Drug Administration (FDA) specifically for patients with Waldenström macroglobulinemia.

What is the name of the drug that is used in combination with Rituximab?

Rituximab (Rituxan) Other agents used alone or in combination for primary treatment are cyclophosphamide (Cytoxan), carfilzomib (Kyprolis), and thalidomide (Thalomid)

What is the treatment for Waldenstrom macroglobulinemia?

Targeted therapy for Waldenstrom macroglobulinemia includes monoclonal antibodies. A monoclonal antibody is a type of targeted therapy. It is directed against a specific protein in the cancer cells, and it does not affect cells that do not have that protein. Rituximab (Rituxan) is a monoclonal antibody used to treat many different types of B-cell lymphoma.

How to give systemic therapy?

Common ways to give systemic therapies include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).

What is Bendamustine used for?

Bendamustine (Treanda), which is used to treat Waldenstrom macroglobulinemia when it is first diagnosed or when it returns

How does rituximab work?

Rituximab works by targeting a molecule on the surface of cells called CD20. When the antibody attaches to CD20, some lymphoma cells die and others appear to become more susceptible to chemotherapy. Rituximab can be used either alone or in combination with chemotherapy for people with Waldenstrom macroglobulinemia.

How to learn about cancer medications?

The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications . It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications. Learn more about your prescriptions by using searchable drug databases.

Why do doctors want to do clinical trials?

Doctors want to learn whether the new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Clinical trials are an option to consider for treatment and care for all stages of cancer.

Where are stem cells collected?

A stem cell transplantation is a medical procedure in which specialized cells, called hematopoietic stem cells, are collected from the the blood circulating through the body, called peripheral blood, so they may develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Sometimes, the stem cells are collected from bone marrow, so the procedure may also be called a bone marrow transplantation.

What kind of doctor treats Waldenstrom?

At Mayo Clinic, a multidisciplinary team of experts provides whole-person care to those with Waldenstrom macroglobulinemia. Your care team may include hematologists, pathologists, radiologists, nephrologists and neurologists. Other experts are included as needed.

Does Mayo Clinic require a referral?

In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals, or may have additional requirements for certain medical care.

Can Waldenstrom macroglobulinemia be cured?

At Mayo Clinic, a multidisciplinary team of experts works together with you to understand your condition and create a treatment plan that meets your needs and goals. Though this rare disease can't be cured, Waldenstrom macroglobulinemia can be controlled. Mayo Clinic doctors draw on their extensive experience to provide you with expert, personalized care.

Does Mayo Clinic treat Waldenstrom?

People who seek care at Mayo Clinic have access to all the available treatment options for Waldenstrom macroglobulinemia, including autologous stem cell transplant and clinical trials. Your care team will work closely with you to understand your needs and goals and to develop a personalized treatment plan.

What to do after cancer treatment?

During and after treatment, it’s very important to go to all follow-up appointments. During these visits, your doctors will ask about symptoms, examine you, and order blood tests or imaging studies such as CT scans or x-rays. Follow-up is needed to see if the cancer has come back, if more treatment is needed, and to check for any side effects. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

Does eating well help with myeloma?

Adopting healthy behaviors such as not smoking , eating well , getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of myeloma or other cancers.

Is Waldenstrom macroglobulinemia a cure?

Current treatments for Waldenstrom macroglobulinemia (WM) are not likely to result in a cure. Most people with WM are treated for some time, followed by a break, and then treated again when the disease comes back. Learning to live with cancer that does not go away can be difficult and very stressful.

Can you get cancer from WM?

People who’ve had WM can still get other cancers. In fact, WM survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Waldenstrom Macroglobulinemia.

Can I lower my risk of Waldenstrom Macroglobulinemia progressing or coming back?

If you have (or have had) WM, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.

Anxiety

Anxiety is a normal reaction to cancer. It may increase feelings of pain, interfere with sleep, cause nausea and interfere with the quality of life of you and family. Most patients who have not had an anxiety condition before their cancer diagnosis will not develop an anxiety disorder associated with their cancer.

Appearance

Looking good is not a matter of vanity. Studies show that people who are pleased with how they look have more energy, more resilience and a better attitude. This helps them handle the "ups and downs" of cancer treatment more easily.

Changing Feelings About Intimacy

Feelings about close physical and intimate relationships are related to the way people think about how they look to others, their ability to handle physical activity, level of fatigue, sexuality, anxiety or stress. These can place a strain on normal expressions of sexuality and can create concern about sexual desire.

Changing Taste and Smell

A change in the way food may taste and/or smell can often be a side effect of cancer or cancer treatments.

Constipation

Constipation can result from cancer treatments, medications or from lack of fiber, fluids and movement. Check with your doctor or nurse before using over-the-counter laxatives, stool softeners or enemas.

Controlling Pain

Pain may be caused by different factors including diagnostic procedures, cancer treatment, the cancer itself, and other reasons not related to cancer. Pain, if not treated, may impact your quality of life. This is because pain is not only a physical experience but also a psychological and social experience.

Dehydration

Dehydration can be a common but preventable side effect of many cancer treatments.

What is Waldenstrom macroglobulinemia?

Takeaway. Waldenstrom macroglobulinemia (WM) is a rare form of blood cancer that causes too much abnormal white blood cells, known as lymphoplasmacytic cells, in the bone marrow. Also known as Waldenstrom’s disease, WM is considered a type of lymphoplasmacytic lymphoma, or slow-growing non-Hodgkin’s lymphoma.

How to treat WM?

A variety of chemotherapy drugs can treat WM. Some are injected into the body, while others are taken orally. Chemotherapy can help destroy cancer cells that produce too much IgM.

What is the treatment for hyperviscosity syndrome?

Plasmapheresis. If you have hyperviscosity syndrome as a result of WM, you may need plasmapheresis right away. This treatment involves using a machine to remove plasma with abnormal proteins from the body to lower your IgM level. Other treatments may be available as well, depending on your specific condition.

What is WM in medical terms?

Also known as Waldenstrom’s disease, WM is considered a type of lymphoplasmacytic lymphoma, or slow-growing non-Hodgkin’s lymphoma .

How old do you have to be to get WM?

On average, people typically receive their WM diagnosis at the age of 70. Although there’s no current cure for WM, there are treatments that can help manage its symptoms. If you’ve been given a WM diagnosis, here’s what to know about the survival rates and outlook as you navigate the next steps.

Where does WM start?

WM starts in the lymphocytes, or B cells. These cancer cells are called lymphoplasmacytoids. They’re similar to the cancer cells in multiple myeloma and non-Hodgkin’s lymphoma.

Does WM have a standard staging system?

Unlike other types of cancer, WM has no standard staging system. The extent of the disease is a factor when determining treatment or evaluating a patient’s outlook. In some cases, especially when first diagnosed, WM causes no symptoms. Other times, people with WM may experience symptoms like: weight loss.

Do I need to start treatment as soon as possible?

Not all people newly diagnosed with Waldenstrom macroglobulinemia need immediate treatment. If you don’t have symptoms, you usually do not need to be treated. One in four people (25 percent) are asymptomatic – meaning without symptoms – when diagnosed. And because WM is a slow-growing lymphoma, you may not have symptoms for many years.

What are the indications that treatment is needed?

Active treatment should only begin when a person becomes symptomatic and the disease is causing problems. Treatment should not be started based on blood tests alone. In the past, increases in IgM levels were used as an indication to start treatment; this is no longer the case, except for those with very high levels.

What is Waldenström macroglobulinemia?

Waldenström macroglobulinemia (WM) is an indolent (slow-growing) subtype of non-Hodgkin lymphoma that affects small lymphocytes (white blood cells). WM is rare, with an incidence rate of about 6 cases per million people per year in the United States.

Why is WM diagnosed?

At least 25 percent of people with WM are asymptomatic (have no symptoms), and the cancer is diagnosed because of abnormal results from blood tests that were ordered, usually during a routine physical exam.

What tests can be done to detect WM?

Imaging tests may include computed tomography (CT or CAT) scan, which may evaluate the chest, abdomen and pelvis to detect swelling of the lymph nodes and the enlargement of the liver and/or spleen. A skeletal survey (x-rays of the skeleton) can help distinguish between WM and a similar plasma cell cancer called “myeloma.” In contrast to myeloma, in WM no lytic bone lesions are seen. Magnetic resonance imaging (MRI) and/or positron emission tomography (PET) may be useful in determining where the lymphoma is located throughout the body.

Why is radiation therapy used infrequently?

Radiation therapy is used infrequently to treat WM patients because of the toxic effects of this treatment on older patients. It may be used in the rare occurrence of bony lesions.

How rare is WM?

WM is rare, with an incidence rate of about 6 cases per million people per year in the United States. About 1,000 to 1,500 people are diagnosed with WM each year in the United States. WM results from the accumulation, mainly in the bone marrow, of clonal lymphocytes, lymphoplasmacytic cells and plasma cells that secrete a monoclonal IgM protein; less than 5 percent of other LPL cases are IgA-secreting, IgG-secreting, or nonsecreting LPL. WM accounts for approximately 1 to 2 percent of all hematologic (blood) cancers.

What percentage of WM patients have non-Hodgkin lymphoma?

Transformation. About 10 to 15 percent of WM patients have disease that transforms to aggressive non-Hodgkin lymphoma. This complication is usually associated with a marked enlargement of the lymph nodes and/or the spleen, an increase in serum lactate dehydrogenase (LDH), and weight loss, fever and night sweats. Cytogenetic abnormalities are often found in involved tissues—for example, the lymph nodes and/or bone marrow—at the time of transformation.

When is plasmapheresis used?

Plasmapheresis is used when IgM levels get very high and the blood becomes very thick. Plasmapheresis reduces the viscosity (thickness) of the blood using a machine that separates the plasma (the liquid part of the blood) that contains the abnormal protein from the blood cells. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids. Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure. Treatment with plasmapheresis alone may be indicated if hyperviscosity is the patient’s only symptom. Impaired kidney function can generally be reversed and hyperviscosity symptoms can be alleviated by removal of the abnormal protein through plasmapheresis. In some cases, plasmapheresis is used when a patient’s WM is not controlled by chemotherapy, biological therapy or other treatments.

Waldenstrom Macroglobulinemia Care at Mayo Clinic

• At Mayo Clinic, a multidisciplinary team of experts works together with you to understand your condition and create a treatment plan that meets your needs and goals. Though this rare disease can't be cured, Waldenstrom macroglobulinemia can be controlled. Mayo Clinic doctors draw on their extensive experience to provide you with expert, personalize...

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