This section is dedicated to supporting doctors who have patients diagnosed with WM. For a GP this may be the first and only encounter of a disease which was briefly mentioned back in training years ago.
One problem doctors may encounter is that some reference materials to hand, and even some online information, is wildly out of date as improvements in treatment for Non-Hodgkin Lymphomas have greatly improved disease prognosis. Even now, some materials quote only 5 years as a median survival time, whilst this has at least doubled due to early diagnosis and improved chemotherapy, and many patients now die with the disease, not of it. Patients may also see these older survival statistics and worry unduly.
A second problem reported by some patients is that some doctors use generalised terms in their explanation of the disease (such as a lymphoma) and fail to actually call it WM. This does make it very difficult for the patient to do further research online, as the majority now do - many patients or their carers become very well briefed 'experts'.
On diagnosis, usually after an extended blood test, WMUK and its medical advisory board recommend that patients are directed to a specialist unit, usually in a major teaching hospital which sees substantial numbers of WM patients. Some hospitals are listed along with the board's listings in the 'about us' section, but the list is not at all exhaustive. The main reason is that these units are usually better resourced, have access to the newest therapies and run medical trials. We generally think that it's worth travelling a substantial distance to see a WM specialist as the disease in many ways presents a unique set of challenges.
There is another reason for locating a centre of excellence. It is almost inevitable that the WM patient will undergo a series of treatments and relapses and some widely used first line treatments, such as Chlorambucil and purine anagogues may prejudice success in later therapies such as autologous stem cell transplants which are becoming more common, and this must be thought through carefully. This long term perspective may not be wholly understood by a more generalist doctor.
Resources for Doctors
In the links section there are numerous resources, particularly the new Lymphoma Association leaflet, but we draw particular attention to resources provided by the IWMF in the USA who provide a doctor's info pak, resources, 'The Torch' magazine and medical emailed newsletter: here is an extract from the IWMF site:
Materials for Physicians
- Waldenstrom’s Macroglobulinemia - Review most recently updated in November 2008, is a technical booklet written by Dr. Morie Gertz of Mayo Clinic, an authority on the treatment of WM. It is available separately or as part of the physicians' Information Package.
- Physicians' Information Package (Info Pak) includes the above booklet plus the following sample of publications for patients and brochures for your office. Please click here to order your Info Pak online.
- You may want to subscribe to the physicians' WM Mailing List, which is maintained for medical professionals. Subscription ensures that you will receive the Torch – the IWMF quarterly newsletter – plus special bulletins, research results, updates on clinical trials, and other information of interest to professionals treating WM patients or engaged in WM-related medical research. The physicians' WM Mailing List is guaranteed spam-free and is never exchanged or given to others. Mailings are occasional, with the exception of the quarterly newsletter.To sign up, contact the IWMF Office.
It would also be good if the patient were directed to the IWMF website as they will provide free of charge a patient pack (although they will always welcome a donation!) See also links to the UK Support Group, Online Forum and of course to WMUK itself.
If you become interested in the disease, there are biennial international workshops which many UK specialists attend and proceedings are available. Here is a little of the history of the workshops from the IWMF site:
- In September of 2000, the IWMF and the National Cancer Institute sponsored the first workshop on WM for medical professionals in Bethesda, Maryland.
- In September of 2002, the Dana–Farber Cancer Institute assumed the management of the workshops, now known as the International Workshops on Waldenstrom’s Macroglobulinemia (IWWM), and the IWMF joined with pharmaceutical corporations and other foundations to sponsor these bi-annual events. The 2002 Workshop (IWWM2) was held in Athens, Greece, where the invited attendees included the top WM researchers in the world. Papers presented at this conference were published in Seminars in Oncology, April 2, 2003.
- The IWWM3 was held in Paris, France, in October of 2004. Reports from both IWWM2 (Athens) and IWWM3 (Paris) are combined in a booklet published by the IWMF, Reports from the Second and Third International Workshops on Waldenstrom’s Macroglobulinemia.
- The fourth Workshop, IWWM4, was held in Kos, Greece, in June of 2007, followed by IWWM5 in Stockholm, Sweden, in October of 2008. By this time the researchers attending numbered more than 100. The IWMF has a summary report of the Stockholm IWWM5 and a list of published articles by the workshop presenters. This information is included in the physicians' Information Package.
- A Sixth Workshop took place in October 6-10, 2010 in Venice Italy. The IWMF will provide articles and proceedings information when they become available.
The seventh workshop is in Rhode Island USA in August 2012. More details are on the Bing Centre website bingcenterforwm.org