IWMF

The IWMF - International Waldenström's Macroglobulinemia Foundation - sent me a giant package of information about the disease.  In addition to a welcome letter with phone numbers for support groups and people with information about various aspects of the disease, the package includes 6 glossy five-by-eight booklets:

• Review of Therapy, discussing various therapies and the scientific literature on their outcomes;
• Treatment Options, which appears to cover much of the same material but from the point of view of the patient rather than as a review of science;
• Medical Tests, discussing the various tests to diagnose the disease and the reasons for performing them;
• Basic Immunology in Waldenström's Macroglobulinemia, describing the relationship between the disease and the immune system;
• Healthy Living, which recommends healthy lifestyle choices which are intended to make it easier to live with the disease (nutrition, exercise, the usual suspects); and
• Questions and Answers, a basic FAQ list (Frequently Asked Questions, for non-geeks out there) on the disease and treatment.

The plan is to plow through all of these.  So far, I'm about 20 pages (out of about 60) into the first one above.  It's heavy going - lots of references to scientific literature, and discussion of outcomes both in terms of remission of symptoms and life expectancy.  I'm still struggling a bit with this life expectancy thing; I kind of think that this booklet focuses on it in the discussion of various studies because the disease is a cancer, and that's a standard measure of effectiveness.  My current point of view is that it's not likely to be fatal ("It is more likely that you will die with WM than from it"), but that one could die from it, just as one could die from a cold, or from the flu, or the measles, or just walking down the street.  This is one of the things I intend to discuss both with my hematologist and with Steven Treon when I see him in Boston.

Anyway, that's getting away from a discussion of the IWMF.  Besides all the material they sent, their Web site has all kinds of good information.  Among other things, there's a discussion group that I intend to join.  According to the Web site, the group has about 20 messages per day.  I'll see how that works out, and post something about it..

There are no support groups listed for NJ, although there is one for NYC.  I've emailed the named contact for that group (last week), but haven't heard anything back yet.  In the package the IWMF mailed to me, there is a support contact in NJ for Rituxan treatment; he's in area code 201, so it's not too far from here, and I'll get in touch with him soon.