Well I have had my ankle fusion surgery and now am in the recovery phase so back to crutches and all that. But now I am turning my attention to the forthcoming phase of my CLL which according to my hematologist is in need of requiring treatment. However before deciding on a treatment plan I feel that a consultation with a CLL specialist would be both wise and beneficial. So far the only specialist tests I have had are a recent 17P blood test which came back as un-deleted (this was at my suggestion!!) and a CT scan about 6 months ago, not sure about the results as when I asked was told it showed "some" enlargement. However I am experiencing increasing stomach bloating, after even small meals, with an increased gastric reflux activity which particularly impacts when bending over and even lying down which suggests a more serious enlargement than I have been led to believe. I do have extensive lymphadenopathy. Going by what I have gleened from this excellent forum and by watching some of George Fellows excellent presentations it would seem that a more comprehensive testing of parameters (aka 17Q, 13Q, TP53, Trisomy, IGHV, etc.) should be done so that any treatment option can be tailored to the particular CLL profile in question. Is there a NHS standard for this?? So far I do not get a sense that my current hematologist is properly up to speed with current CLL management. Therefore as per the post title I am seeking a CLL specialist in the SE UK. I realise that there are no doubt quite a few operating in the London area but would prefer if possible to find someone who is outside of the M25. Any help would be much appreciated.
Sorry for the lengthy post.