The posts on sub-pages here relate to indolent lymphoma and to Waldenstrom Macroglobulinemia (WM) specifically. If you are a member of an IWMF discussion list, the appropriate place to post comment is at the list referred at the bottom of the page. Otherwise – blog on!
SOME GENERAL POINTERS:
Disease should be regarded as something other than genetic misfortune and the result of life’s accidents. Both those views are entirely negative… they have real value only if you wish to garner true misery from life. I don’t spend my time searching for the dark center of a black hole. Instead, I am interested in escaping the crushing pressures of such demonic places. Time will wear us down, but we have tools to grasp, things we can do to give our mind and body the best chance of staying vital. Some of these may involve medical help. Others might simply require applying a bit of wisdom that granny would have known. All of them demand that you engage a process of lifelong learning.
We need to find information, sort it, and discuss its meaning with others whose training and experiences of life are relevant. We need to assume responsibility for our own course, making the key lifestyle decisions with a keen sense of enquiry and flexibility. Life is not a half-time business. If you make it so, then you might only get half the time nature equipped you to live. And as we learn, we should pass some of the wisdom along to the coming generations – just as granny tried to do.
Understand any drugs that you might be using.
For those concerned about Waldenstrom Macroglobulinemia – WM (aka Lymphoplasmacytic Lymphoma – LPL), the IWMF organization has a splendid information base. Go to www.iwmf.com At the page http://www.iwmf.com/Publications.htm there is a great selection of material and references to other websites. Remember that differently classified diseases have many common features in terms of therapy especially. Look for other sites under the general heading of “Lymphoma” and also for sites dedicated to major therapies such as “Rituxan”. Search engines will find them. If you have difficulty, put a whole sentence in the search box. For those with a research interest, there is www.winsilico.com at which you can get involved with modeling work concerning WM and also thrombocytopenia.
The American Cancer Society provides a useful document that can be downloaded easily. This discusses conventional medicine as well as mentioning complementary and alternative medicine (CAM) as well. To download pdf file “Waldentrom’s Macroglobulinemia” from the American Cancer Society, go to
Some significant excerpts are
A: Can Waldenstrom Macroglobulinemia Be Prevented?
Most people with Waldenstrom macroglobulinemia have no known risk factors. The risk factors that are known, such as aging, cannot be changed or controlled by a person. For these reasons, there is no known way to prevent this disease.
Some patients with monoclonal gammopathy of undetermined significance (MGUS) will develop Waldenstrom macroglobulinemia. There is currently no test that can predict which patients will do so and no treatment to prevent this from occurring.
You can use the questions below to spot treatments or methods to avoid. A “yes” answer to any one of these questions should raise a “red flag.”
- Does the treatment promise a cure for all or most cancers?
- Are you told not to use standard medical treatment?
- Is the treatment or drug a “secret” that only certain people can give?
- Does the treatment require you to travel to another country?
- Do the promoters attack the medical or scientific community?
The decision is yours:
Decisions about how to treat or manage your cancer are always yours to make. If you are thinking about using a complementary or alternative method, be sure to learn about it and talk to your doctor about it. With reliable information and the support of your health care team, you may be able to safely use methods that can help you while avoiding those that could be harmful.
C: RISK FACTORS
Researchers have found a few risk factors that make a person more likely to develop Waldenstrom macroglobulinemia. However, most people with these risk factors never develop the disease. Even if a patient with WM does have one or more risk factors, it is impossible to know for sure how much that risk factor contributed to causing the cancer.
Monoclonal gammopathy of undetermined significance:
Monoclonal gammopathy of undetermined significance (MGUS) is an abnormality of antibody-producing cells that is related to multiple myeloma and Waldenstrom macroglobulinemia. In MGUS, like WM and multiple myeloma, abnormal cells in the bone marrow make a large amount of one particular antibody — when this happens it is called a monoclonal gammopathy. As long as the patient has no problems from the abnormal cells or the antibody, it is called MGUS. Generally, the abnormal cells in MGUS make up less than 10% of the bone marrow and the amount of abnormal protein in the blood is not very high (<3g/dl). In most cases, MGUS causes no health problems, but up to 25% of people with MGUS will go on to be diagnosed with a cancer (either multiple myeloma, WM, or another lymphoma) over the 20 years after diagnosis.
Age is a significant risk factor. This disease is rare among people younger than 50 years old.
Waldenstrom macroglobulinemia is more common among whites than among African Americans. In contrast, multiple myeloma is about twice as common among African Americans as white Americans. The reasons for these differences are not known.
Men are more likely than women to develop this disease.
Genetic factors may play a role. In one study, about 5% of patients with Waldenstrom macroglobulinemia had a close relative with the disease, and another 15% of WM patients had a relative with another type of lymphoma.
A recent study has shown that people with chronic hepatitis C infection develop WM over twice as often as people without the virus.
CAM is usually a contentious topic and largely so because there is a large and poorly regulated industry poised to take advantage of the gullible. But that is not a fair description of the entire field or its purpose. Always look for evidence as you would when having your car repaired. There is a growing trend to talk separately about ‘Evidence-based Complementary Medicine’. This topic is explained fairly succinctly at the University of Toronto site ‘Center for Evidence-Based Complementary Medicine’ http://www.cebm.utoronto.ca/ . Now, it is said frequently that the majority of patients with advanced cancer will use some form of complementary or alternative medicine (CAM). So it is necessary that palliative care professionals and patients / family are able to discuss the possible benefits and disadvantages of these therapies. You want the evidenced-based facts and not the anecdotal evidence or historical myths. As you explore, heed the red flags listed above.
There is one general area, however, that we must not forget. This underpins everything. It is called
- emotional stress,
- exercise and
All of these lifestyle choices need to be made wisely otherwise your longevity is at peril. It is difficult to claim that wise choices will cure simply because you have made them. On the other hand, it is very easy to demonstrate the bad effects of poor personal and social conditions. Research some topics like “disease of affluence” and “obesity related illness” and you will be mortified. Though we in the West are living longer, we are not necessarily living better. Much of the gain comes from eliminating accidental or wrongful causes of death. But age, we must if we intend to be here for a long time. So aging well is a personal objective we need to hold – not just when we are old, but from when we arrive at the very beginning of life. Some of our basic tenets are now very wrong.
Best of luck –
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