@suzjlance Yes interesting and I understand why they maybe having problems. This is very complicated so just ignore if you want. My understanding and I am not an expert is CD5 positivity can certainly be seen in CLL, but that CD5 alone doesn't establish CLL. I would be interested to know whether your marrow/flow report mentions CD20, CD23, CD200, FMC7 and light-chain restriction. LPL is usually CD5 negative, although a small minority of LPL cases can be CD5 positive, so perhaps that is part of the reason your doctors have interpreted the findings differently. CD6 if I remember is often associated with T Cells not B Cells so are you sure it is CD6? it can ocassionaly be B Cell I think. I personally think you need the marrow looked at by one of the true experts and the USA has many, Mayo used to have Dr Ansell who is very good and Dana faber has Dr Castello's team, I am not sure if these still take new patients but their teams do. I have heard the argument that not all these rare Lymphoma's can be diagnosed fully and it does not always matter, my personal opinion is try and find out as closely as you can so you understand what to look out for if on active monitoring and/or how to best treat if needed.

I forgot to add did you have anything on MY88, normally MYD88 L265P or MYD88 WT (Wild Type, normal) in LPL if Waldenstroms (LPL IgM) then this is normally MYD88 L265P (aprox 95%) and if LPL is IgG, IgA or Non Secretory then around 40 to 60% have the Wild Type.

I am sorry you are going through this confusion but from my wife's LPL I know how little many Haematologists (except the real experts) understand about marrow reports and it has taken me around 3 years to understand them a little, and I am still learning.

All the best

Jon