Patient Tales

There are more Tales in the pipeline, but we'd like more stories from you to add to these on the website and to have for our 'Patient Tales' wall at the Annual Forum. If you can help us, simply email us for guidance.  If you are newly diagnosed or not yet treated, please note that these tend to be complex, long term Patient Tales, so do not get unduly worried or treat them as typical!

Mouse over each TILE to see a summary and click the NAME to learn more!


FCR chemo,constant infections, rheumatism and swelling feet- WM always surprises!


My WM story began in early January 2009 when, at the age of 67, I discovered a lump under my arm

Dorothy's Tale

WM with Central Nervous System Involvement


At 62, 10 years watch and wait followed by R-CHOP, R-Fludarabine and DHAP - now watch, wait and mountain walk!


Multiple cyles of chemo and relapse, followed by an autologous stem cell transplant. The photo shows the last of my hair coming off during transplant!


Neuropathy in the feet led to my diagnosis, then treatment with Fludabarine and Rituximab (FC), under medication for continuing nerve pain.


Diagnosed 1995 having pneumonia. WM confirmed by bone marrow biopsy. On Watch and Wait until 2004 when I became anaemic and started to lose weight, then treated over time with Chlorambucil, then Fludabarine, Rituximab, R-CVP and lastly successfully Velcade 2012.

Simon's Tale

Ibrutinib success after chemotherapy fails