You may have been told that this is a very rare blood cancer, that WM is closely related to multiple myeloma, that very little is known about it, that average survival is 5-7 years, and that WM is incurable.

If you asked the question of your doctor that many of us have asked, "How long do I have?" you may have been told that no one knows for sure, or like some have been told, that it would be "appropriate to start getting your affairs in order!"

This section of our website is directed to you who have just been diagnosed. The first thing we want to tell you is to relax. Take a deep breath. Like most things we worry about in life, it can't be as bad as your imagination can make it! WM is a serious disease and it is not to be ignored or taken lightly. However, this is a slow moving, often indolent disease and immediate aggressive treatment is seldom required. This is a situation which requires more attention than most diseases since expertise is rare, and you will need to get involved with your diagnosis and treatment. It is more likely that you will die with WM than from it. So let's get started on your new study project. Here are the steps we recommend you take as soon as possible.

1. Call or write the IWMF (941-927-4963) or email info@iwmf.com and ask to be sent a Patient Information Package (InfoPak) which contains our publications and other helpful information. See a description of the information that is provided by clicking on the "Publications" tab at the top of this page.

2. Once your diagnosis is certain, ask for a copy of ALL of your tests and medical information.

3. Sign up for the IWMF-Talk (Internet Discussion Forum).

4. If there is one available in your area, find a Local Support Group.

5. Go to the Telephone Lifeline and call one of the contact people for "Newly Diagnosed."

6. Start building your file or notebook with everything you can gather on WM.

7. Start asking around for a second opinion, preferably in a different office and/or institution, with a doctor who has some (the more the better) experience in treating Waldenstrom's patients. Do not get a second opinion from someone who has only seen a few WM patients. Try to find someone very experienced.

8. Survey your insurance benefits and options. See "Can you apply for SS Disability Benefits?"

9. If you’re a Vietnam Veteran, see “VA Benefits” for information on how to apply for disability compensation and other benefits from the U.S. Department of Veterans Affairs (VA).

10. Take another deep breath, relax, and settle in for the long journey of discovery and reflection. Resolve to take action and get involved and become an active and determined participant in your own health care. We promise to do everything we can to help and we can also assure you that this may be the most interesting medical adventure of your life. Welcome to a new, unique, provocative, and fascinating perspective on life.