2 clones

[Imbub]

results of recent CT scan show 2 clones. Cll and Waldenstroms macroglobulinia with the WM being the majority. Anyone here even heard of this? My cll specialist is meeting next week with a group of other speciLists to decide where I should go from here.

[Jm954 Administrator]

Both are relatively mature B cell disorders and I think we did have at least one other member with two clones like yourself. A quick search shows qgar and Retiredman both have waldenstroms and may be able to share their experiences.

Wishing you all the best

Jackie

[Imbub in reply to Jm954]

thank you Jackie

[kesslm]

Hi, this is Mary. I have Waldenstrom's Macroglobulinemia. It is a rare form of non-Hodgkins Lymphoma. I belong to the International organization for Waldenstroms. Here is the website: iwmf.com/. You can access a lot of great information there.

[Hidden]

I have Waldenstroms. I guess testing positive for both CLL & WALDENSTROMS is very unusual I read somewhere ihat they are very similar & often have the same treatment options . I've had dexamethasone alone, Rituximab alone, full chemo (Rituximab, dexamethasone and cyclophosphamide for 10 months) Rituximab + Ibrutinib (stopped because of sude effects) Now on Rituximab at 2 monthly intervals+ Zanubrutinib. I'm doing ok. My monoclonal peak is well down. White blood cell count is borderline ok. Waldenstroms (and I suspect CLL) affect different people different ways with different treatments working for different people. Trust your docs but don't be afraid to ask for a second opinion! Good luck!