Recently diagnosed with Waldenstroms macroglobulinemia.

****anything..... not nothing, I hope obviously it's done a lot...

Hi, yes have heard of it and know a small handful of people whi have it but they do not post often if at all on the LA site the is a group which is not very active but you can read some posts by others

https://www.lymphomas.org.uk/forum

Normally the treatment you have had is effective so hopefully you will get good news

john

Hello JBLB13, I have Waldenstroms or WM as we call it.  I  had Bendamustin and Retuxumab treatment a couple of years ago and so far am fine. I am 71 nearly 72 and still work and do all I use to do although slower now with age! I have 6 monthly check ups at hospital with the Oncologist preceded by a blood test to check on the Igm. I am also on 6 weekly Imunoglobulin infusions to lee my immune system up to scratch. The procedure is similar to the chemo - cannula and drip - takes about 4 hours. There is a good WM dedicated group run by Roger also a WM type called WMUK see : www.wmuk.org.uk

As you or someone has said WM is sufficiently rare for very few to pop up here.

Best wishes

Phil

Hi

I am due 5th cycle of same treatment as told September 2016 at 51 that i had WM being treatment in Surrey but did have plasma exchange at St George's - all going to plan but have ended up in Hospital with chest infections so a few delays in treatment. I have 6 cycle of chemotherapy and Rituximab have you had shorter treatment?

Yup I've got WM. Three cycles in on my first treatment R-Benda. Going OK at the moment, blood seem to be rising nicely between treament cycles. I hope yours looking good after treatment