Q How long have I got, doctor?
A Older studies quote 5 years as a median survival time. This is out of date. Firstly diagnosis now takes place at a younger age and secondly treatment effectiveness has advanced with increasing speed in the last 10 years. Many newly diagnosed patients may now expect to die with WM, and not of it!
Q What's the best treatment?
A The most appropriate treatment will depend on such factors at the severity of the disease, the experience of the specialist and age at diagnosis. For example, stem cell transplants become increasingly difficult with age and number of previous treatments. Most therapies involve chemotherapy cocktails with acronyms such as CHOP, CVP - from the initial letters of the ingredients. Many contain Rituximab (Mabthera overseas) in combination with other agents.
Q Where can I get the best treatment?
A Inevitably this will be at a teaching hospital with a specialist unit. It may be badged with Myeloma, Lymphoma or Haematology labels. Don't be afraid to travel for quality treatment and well resourced units.
A good question to ask your prospective consultant is how many WM patients do they treat? Over 6 would be convincing! Have a discussion on the UK or IWMF talklines to check other patient experiences.
Q Why don't I receive immediate chemotherapy treatment like other cancers?
A In many cases WM patients are diagnosed early and WM is usually slow moving so there may be no urgency to treat. Watch and Wait may be appropriate in many cases. Some patients just have plasmapheresis to reduce symptoms for an extended period.