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Waldenström macroglobulinemia is a rare type of slow-growing, non-Hodgkin lymphoma (cancer that begins in the cells of the immune system). It causes overproduction of a protein called monoclonal immunoglobulin M (IgM or “macroglobulin”) antibody.
Waldenstrom's macroglobulinemia usually occurs in people over age 65, but can occur in younger people. A review of cancer registries in the United States found that the disease is more common among men than women and among whites than blacks.
Some patients do not experience symptoms. Others may have enlarged lymph nodes or spleen, and may experience fatigue, headaches, weight loss, a tendency to bleed easily, visual problems, confusion, dizziness, and loss of co-ordination. These symptoms are often due to the thickening of the blood. In extreme cases, the increased concentration of IgM in the blood can lead to heart failure.
The diagnosis of Waldenstrom's macroglobulinemia generally depends on the results of blood and urine tests and a bone marrow biopsy. During this test, a needle is inserted into a bone and a small amount of bone marrow is withdrawn and examined under a microscope.
The initial treatment of Waldenstrom's macroglobulinemia is determined mainly by the thickness of the patient's blood. Patients with hyperviscosity usually receive chemotherapy (anti-cancer drugs). A type of treatment called plasmapheresis may be performed to relieve symptoms such as excessive bleeding and dizziness. In this procedure, blood is removed from the patient and circulated through a machine that separates the plasma (which contains the antibody IgM) from the other parts of the blood (red blood cells, white blood cells, and platelets). The red and white blood cells and platelets are returned to the patient, along with a plasma substitute. Interferon alpha, a biological therapy (a type of treatment that stimulates the immune system to fight cancer) can also help to relieve symptoms. For long-term control of the disease, doctors generally combine plasmapheresis with chemotherapy.
Researchers continue to look for more effective ways to treat Waldenstrom's macroglobulinemia by conducting clinical trials (research studies) of new anti-cancer drugs, combinations of drugs, and new biological therapies. Information about ongoing clinical trials is available from the Cancer Information Service (see below) or from the National Cancer Institute's Cancer Trials® website at http://cancertrials.nci.nih.gov.
This fact sheet, from National Cancer Institute Information Resources, was reviewed on 9/25/2007
(see: http://www.cancer.gov/cancertopics/factsheet/Sites-Types/WM)
Symptoms
Many WM patients really show no symptoms. If the diagnosis comes relatively early in the game, it may be made quite by accident from a blood test given for some completely different reason. Even when symptoms appear, they may be totally different from one person to another. There is, in other words, no single way in which WM shows itself to the outside world. That said, there are certain recurring problems that physicians find in WM patients and that are usually mentioned in the textbooks:
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- Increased size of the spleen, the liver, and some lymph nodes
Tiredness, usually the result of anemia (too few red blood cells)
A tendency to bleed easily and to bruise easily (too few platelets)
Night sweats
Headaches and dizziness
Various visual problems
Pain or numbness in the extremities |
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Needless to say, those are symptoms of many other maladies as well. Only a thorough work-up by a hematologist, usually including a bone marrow biopsy, can determine whether one has WM or something else.
Prognosis
As soon as one is told he or she has an incurable disease, especially if the word "cancer" appears in its description, the question arises, "How long have I got, Doc?" In the case of WM, we don't really know. Everyone's disease is different from every other case that has ever been seen. This is a disease of one's genetic makeup having gone awry and no two of us are built on the same genetic platform. It is also a treatable disease and new and better treatments are constantly being found. One of the purposes of the IWMF is to provide funding, direction, and a pool of willing experimental subjects to the end that development of better treatments will finally result in a true cure.
Traditionally, the textbooks have predicted a life span of five to seven years after diagnosis. But that wisdom is changing. And this is, after all, a purely statistical figure. Let it be said that we have members in the IWMF who have known for 25 years that they have WM and who are still functioning normally. The wise physician, asked that question, may give you the five-to-seven year figure, but you may also be told that you are more likely to die with WM than from it.
Treatment
The IWMF does not prescribe or recommend specific treatment regimens; that is the job you pay your hematologist to perform. The fact is, there is no government-approved course of treatment. Waldenstrom's macroglobulinemia is what is often called an "orphan" disease. Because it is so rare, not enough research has been done specifically on WM to justify the establishment of a prescribed course of treatment. Instead, physicians look at what works in closely related diseases such as multiple myeloma and CLL, and then try to use similar approaches on WM. That is one of the reasons we have begun to give out research funds to those researchers who are willing to look specifically at Waldenstrom's macroglobulinemia.
One more piece of advice: WM is so rare that many hematologists have never seen a case. That in itself may not be a negative. But be certain that the person treating you is willing to find and to compare notes with a physician who has had WM experience. The disease can be difficult to diagnose and challenging to treat. A second or even a third professional and expert opinion is always recommended prior to treatment.
Summary
Waldenstrom’s macroglobulinemia is an extremely rare blood cancer that is treatable, but with present medical technology, incurable. WM is a serious disease, but slow moving (indolent), and immediate treatment is seldom indicated. Unlike other cancers, which can be "staged," there is no scientific evidence that early treatment of WM will increase survival time. Thus, most treatments are directed at symptoms. Those of us who have the disease most often have time to study treatments and implications, to explore the newest of more effective clinical trials, to support research aimed at a cure, and to live a full life. |
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