r/Waldenstroms

I had R/Benda in 2016 and it worked very well.

Now my numbers and symptoms indicate that I need another round of treatment. However, because R/Benda is known to cause DNA damage, there's a school of thought that it shouldn't be repeated. Research papers suggest though that, if it was sufficiently long ago and was well-tolerated and worked, it warrants repeating the R/Benda treatment.

I'm going to get my bone marrow tested for DNA abnormalities as well as testing for CRCX4 and MYD88 mutations to check if the brutinibs will be effective as an alternative treatment to the proposed R/Benda regime.

Any input or insights gratefully received.

Hi everyone,

My mum 70F has been diagnosed with B cell type indolent LPL/marginal lymphoma because her MYD88 has come as negative.
They have said she has waldenstroms (WM).

We’ve seen two doctors both giving different treatment options.
One is saying to go for zanubrutinib as she’s on the older side and there will be side effects to chemo.
The other is saying to go for chemo and if she needs to take Zanubrutinib later if she relapses then she can take it then instead of wearing it off now.

We are extremely conflicted as all of this is like diving into the unknown for us and we have no insight into either of these treatments.

Can anyone advise based on what they know or have been through.