For Doctors

This section is dedicated to supporting doctors who have patients diagnosed with WM and may not have encountered a case recently. For some GPs this may be the first and only encounter with a disease which was briefly mentioned in training.  The key document for both patients and clinicians is Dr Shirley D'Sa's Guide to WM which can be downloaded here

Current BJH treatment Guidelines are downloadable here

Doctors may have reference materials, and even on line information, that is out of date as improvements in treatment for non-Hodgkin lymphomas have greatly improved disease prognosis. Even now, some materials quote 5 years as a median survival time, whilst 8-12 years is more normal 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 non Hodgkin lymphoma, blood cancer or LPL) and fail to actually call it WM. This does make it very difficult for the patient to do further research online and seek support, as the majority now do - many patients and their carers become very well briefed 'experts'.

On diagnosis, (usually after an extended blood test bone barrow biopsy and scan), WMUK and its medical advisory board recommend that patients are treated in a specialist unit if not already, usually in a teaching hospital which sees substantial numbers of WM patients-as the disease presents in so many different ways.  UK specialists have published Treatment Guidelines for Doctors- a summary can be downloaded here  from our media centre and there is a video of Dr Roger Owen outlining the guidelines.

Some doctors with a specialist interest in WM and their hospitals are listed along with the board's listings in the 'about us' section, but the list is not exhaustive. These units are usually better resourced, have access to the newest therapies and run medical trials. They may also have convenient access to neurological clinics for neuropathy and CT/MRI scanners.

WMUK generally thinks that it's worth a patient travelling a substantial distance to see a WM specialist if they are fit to travel, as the disease in many ways presents a unique set of challenges in each patient.  In a number of cases excellent treatment has been achieved by using a local haematologist in consultation with a specialist in a centre of excellence.

There is another reason for working with 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 analogues may prejudice success in later therapies such as autologous stem cell transplants,and this must be thought through carefully. This long term perspective may not be wholly obvious to a more generalist doctor.        

Resources for Doctors

In the links section there are numerous resources, particularly the new Lymphoma Action leaflet, but we draw particular attention to resources provided by the IWMF in the USA and many other resources such as 'The Torch' magazine: here is an extract from the IWMF site:

IWMF 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.
  • 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 the WMUK Online Forum and of course 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 2006, 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 was followed by Rode Island 2008 Venice in 2010, London 2014 and Amsterdam 2016.
  • The 10th International Workshop for WM was in New York October 2018. .

The WMUK Doctor Forum (which has produced WM treatment guidelines) would like to encourage more UK doctors to join it. If you would like to be kept updated on the work of the WM Doctors Group, just send WMUK an email and we will put you in contact, or sign up on the website and join us.   The group meets regularly and you can be kept updated  by email.    WMUK  has made grants for research to Forum members.   

Clinical Trials The UK lags behind other areas in enrolling patients in WM clinical trials. The Forum will update you on any current trials and all doctors are encouraged to put forward to suitable patients the idea of enrolling for a trial.  There are several current trials of novel agents, and more details are on our trials page.Clinical Trials

Rory Morrison Clinical Patient Data Registry At present WMUK has agreed in principle to support the creation of a patient clinical data registry for the UK and is working with Dendrite Ltd which is a world leader in setting up such registries. An appeal linked to the late Rory Morrison led to its test launch in September 2015.  The creation of a registry will bring together for the first time the outcomes of treatment for the majority of UK WM patients, and make anonymised data available to researchers.  It will also help identify those who may benefit from future clinical trials.  If you are keen to be involved in the registry at your hospital, just send us a message or email. 

The registry rolled out nationally in Autumn 2017 at 12 designated centres, anticipating the introduction of Ibrutinib for relapsed patients through the Cancer Drugs Fund. There is now a doctor project manager in post at UCLH.  More centres are welcome to join. Just send us an email and we will pass on.