Hi Sophie

Sorry about your mum.

It's great that you saw a nurse who was so helpful and that your mum has been offered a clinical trial.

I found this thread from last year:

www.cancerresearchuk.org/.../waldenstroms-macroglobulinaemia

If you post on it you may get a response from the members who were talking to eachother last year.

You will see too that there is a weblink to a group for those affected by the condition. It is based in the US so some of the information may not relate to the UK.

However, it might be helpful to you.

Best wishes

Jane

Hi, My Dad and 3 of his brothers all had WM. A bone marrow biopsy and full body scan should be offered as well as regular blood tests for Igm. After being monitored for MGUS and IgM with blood tests, raised levels alerted the doctors at the hospital who gave my Dad a full body scan which revealed a small cancer tumour at the top of his right lung. Subsequently it was removed and we thought dad was out of the woods. However because of the WM he then had acute anaemia and furhter tests and scans in which a cancerous brain tumour was found, from which he subsequently died. Unfortunatly he and all three of his brothers had or in the case of the only surviving brother has WM and brain tumours which 3 have died from. I urge you to keep having scans, thay found my dads lung cancer when it was 1cm big and he survived that. Take any trail they can give you.