Living with WM
WM presents a vast range of symptoms before diagnosis, which can involve extreme fatigue, night sweats, lack of concentration, increasing susceptibility to infections such as shingles, breathlessness, sinus problems, possible weight loss, gum and nosebleeds and tingling in the extremities due to nerve damage. Although WM is a Lymphoma, only a small proportion of patients have swollen lymph glands - typically under the armpits or around the neck, found manually or by scans.
In most cases the disease is slow moving (indolent), giving patients and doctors time to assess progress. Often the first symptoms are spotted by partners and may be confused with other diseases such as early MS, particularly if there is peripheral neuropathy (sensory nerve damage in hands or feet - usually tingling or discomfort) caused by the disease.
In a number of cases, WM is symptomless and is picked up by a routine extended blood test which includes immunoglobulins. The patient may then be placed on 'Watch and Wait'. In some people it may never develop into full WM - sometimes staying at a precursor stage, called 'smouldering WM or MGUS'.(Monoclonal Gammopathy of Undetermined Significance.)
The pathway for most patients is treatment resulting in remission to varying degrees, then re-treatment with a different therapy after relapse. As therapies have become more effective, the time to relapse has become longer and recent developments give the increasing promise of treating WM as a chronic disease which will be controlled in the long term, not unlike diabetes. For many, the main challenge will be dealing with the side effects of chemotherapy rather than the disease itself. Long term fatigue is common in WM, even after successful treatment.
It's important psychologically for most patients to take control of their disease, rather than seeing themselves as victims, and learn to live with it and negotiate their 'journey'. Many become expert patients, reading about new treatments (perhaps setting up Google alerts to flag up news), attending support groups and involving themselves with on line forums. Many choose to keep key blood test results on a spreadsheet to see how treatment affects them and compare their day-to-day feelings with the latest results. This may be a little alien to the average 'passive' UK patient, but no doctor will fail to give you your results if you ask.
Sometimes dealing with the side effects of WM helps the patient to be more positive. For instance some suffer from gastric reflux which can be easily controlled with daily medication such as Lanzoprazole and others from persistent sinus infections which can be sorted by a simple operation. Even nerve damage (from WM itself or from Chemotherapy) can be tested electrically to see if it's likely to be reversible after treatment.
WM Patients also suffer from other diseases
Its easy when you are a WM patient to believe every new ache and pain my be due to WM. WM patients suffer the usual round of low level problems (perhaps a few more if their immune system is compromised) but it is becoming evident from anecdotal evidence and research that probably as we share some common genetic faults we are slightly more likely to get other cancers such as melanoma or breast cancer. Also on average we are over 65, so such diseases are more likely anyway. There is not much to be done about prevention, apart from avoiding sunbathing for melanoma and leading a healthy lifestyle.
It's inevitable that partners, relatives and carers come to feel more under pressure than sufferers.
Finally- remember that you have the right to a second opinion in the NHS and no caring doctor should resist your request should you feel you are not making progress.
Lifestyle and Diet
The only definitive thing which can be said is that WM patients should endeavour to live as full and varied a life as possible and keep reasonably fit. Some embark on fund raising challenges or even run marathons. The IWMF website contains a considerable number of lifestyle suggestions, including 'alternative' therapies, diet and psychology. The IWMF Torch magazine usually has a food section.
It has been reported that some patients have had negative effects from overdosing on supplements such as vitamins and minerals. Some combinations also have been reported as having negative effects on medical treatment, as have anti-oxidants such as green tea. The watchword is moderation! If in doubt, ask your doctor.