Partner just diagnosed, looking for some reassurance

Hi there...

CLL is a very heterogeneous disease as the doctors say, which in simple language means that the outcomes are very variable.

That said there are tests which usually will give a patient some idea of how this disease is likely to progress, if at all.

The basic test is Mutated versus Unmutated and after that some genetic tests for 17p 11q, 13q del etc.

I would very strongly suggest that you Google The Chronic Lymphocytic Leukaemia Support Society where you will find numerous pieces of information. ALL FREE of course.  Then Google HealthUnlocked and join the CLL forum where you will find people from around the world, all of whom have the same disease and all are willing to provide useful information based upon experience. When you get to the CLL HealthUnlocked pages go to the right hand side and there you will see several locked posts giving loads of information for the newly diagnosed. Note here that most people join this forum with an assumed name to keep things private. 

On the good side, roughly 25 to 30 % of CLL patients have a very slowly developing disease and reach old age with no problems.

I myself was diagnosed back in 2005... Yes 2005, so over 15 years ago and I still cycle 50 to 80 miles a day in the summer months and remain fit and active.  From my helping with the forums for these 15 years I can say that those people who eat properly, and remain active do tend to have a slow developing disease.  Even one person I know who was diagnosed over ten years ago still cycles ten miles just to get to his treatment doctors. Significantly there have been MASSIVE changes in the treatments for CLL and now we have a choice of simple pills that can be taken daily to keep the disease under control if that eventually becomes necessary.

Is the diagnosis scary..??  You bet it is for the first few months, but you do get used to it and knowing what to look for and the treatments available helps when you talk to the doctors.

As another patient Andrew Schorr says.. ' Knowledge is the best medicine of all '

Good luck and come back here if any questions, but do try the information sources recommended above.

Thank you so, so much. He's a keen cyclist too so I can't wait to show him your response. This has really reassured me, thank you. We have to wait 4-6 weeks for the haematology referral which will expand our knowledge of the specific variant he has, so here's hoping he's one of the luckier ones.