All WM patients remember the day they were diagnosed and were overcome with disbelief and fear. You no doubt then began to seek information about the disease and about other patients with the disease to help you cope with the sense of isolation and hopelessness. This website will help you. You can take a deep breath and relax because you have found a resource that will give you a different perspective on your future with WM from the one you may have at this moment.
While WM is a serious disease and is not to be ignored or taken lightly, it is also a slow growing, usually indolent, disease, and immediate or aggressive treatment is often not necessary. On the other hand, the diagnosis of WM requires more attention than most diseases. The disease itself is rare and not all oncologists have experience in treating WM patients. You will benefit greatly if you decide to learn all that you can about WM and, in effect, become a partner with your physician in deciding your treatment path for the future. You may also want to seek a second opinion from a physician familiar with WM. This issue is addressed in this section below.
It may offer you relief to know that veteran WM patients and veteran WM physicians have come to understand that a WM patient will very likely live quite a number of years and will die of something other than WM. However, most of us have found it important to become knowledgeable about WM and how it affects our body and to become a "professional patient" who investigates all resources that will help one understand the disease and the treatment therapies. Your investigations will prepare you to work with your oncologist in determining when to treat and how to treat your particular symptoms.
As a start, here are ten steps we recommend you take as soon as possible.
- Call or write the IWMF (941-927-4963) or e-mail and request a patient Information Package (Info Pak) which contains our publications and other helpful information. A description of the Info Pak materials can be found here. You should also consider joining the IWMF.
- Once your diagnosis is certain, ask for a copy of all of your tests and medical information. Purchase a notebook and begin your Personal WM Journal. Accumulate copies of all lab results, notes from medical appointments, medications, and personal health notes. You will be surprised how useful this information will be to you as time goes by. This is something astute patients do continuously, along with learning how to record the major test information on a graph that eventually will show trends in your disease.
- Sign up for the IWMF-Talk (our Internet discussion forum). This is a wonderful place to share information and learn from other patients. You will be very warmly received as a newly diagnosed patient.
- Joining a support group is another way to meet and interact with other WM patients. If you call the IWMF office they will refer you to the nearest support group. If there is no support group in your local area, there are other ways to be in communication with WM patients who can be quite helpful to you. If you find a number of patients in your area without a support group, perhaps you will want to start one.
- Go to the telephone Lifeline and call one of the contact people for "Newly Diagnosed." They can answer many of your questions. For a description of our Lifeline service and contact people, please click here.
- Start building your second WM notebook, or file drawer, with everything you can gather on WM to educate yourself. Call it WM Information or whatever name you choose. You will soon find it filling up with research articles, research results, and information from clinical trials.
- If early treatment is recommended by your doctor, you might want to get a second opinion from a hematologist/oncologist who is experienced in treating WM patients. We can mention several who are known to be experts in WM. Contact with an expert can be handled in two ways: a) through an appointment with the expert for a second opinion; this usually involves a repeat of some of the lab work b) by a telephone conversation between the expert and your local oncologist; the expert will update your physician on the current understanding of when to treat and how to treat and why. Look for further information in this section.
- Register for the Patient Database. When you have some data to report, such as lab test results and symptoms, we hope you will register for the IWMF Patient Database. This is an online confidential database where WM patients post the details of their experience with WM for the purpose of producing analytical reports from this cumulative data. The Patient Database promises to be very useful for patients and their physicians. It is also being discussed among our researchers and physicians as a database that will be useful to them as well, because there is nothing like this in existence for WM. The Patient Database has been developed principally by volunteers to establish a reliable way to collect, organize, and analyze information and records provided from the experiences and test results of WM patients. Patients, or their caregivers, can enter their histories, symptoms, test results, and treatments on a continuing basis. This information will also be accessible to the individual patients who may want to track their own individual results and to medical personnel who can examine the data on a larger scale. The only way that anyone can match an individual patient with his data is by the individual code that is assigned to each patient to access his personal data. Please help to make our Patient Database as effective and useful as possible by adding your data. Go to http://iwmfdatabase.com to register for a password in order to begin to enter your individual data. While all the units for the Patient Database are not yet completed, we expect that they will be available shortly.
- Survey your insurance benefits and options. Review the website page on Disability Benefits, VA Benefits, Social Security and Medicare. You may be able to qualify now for assistance from these programs.
- Next: relax and settle in for the long journey of discovery and reflection. Resolve to take action and get involved and become an active participant in your own health care. In the process of becoming a cancer patient, and with all the pain this brings to patients and their loved ones, many patients find new clarity and purpose in life. Many are led to make life choices to enhance their time with loved ones and engage in the use of ‘filters’ to clear out their lives and make decisions about what they now want to do with the time ahead. Many patients find this to be a unique growth experience.
Speaking of the "Newly Diagnosed" experience...here's some videos of reflections by fellow IWMF members about their experiences and sentiments regarding being diagnosed with WM:
WM Diagnosis Testimonials