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.
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Redlion
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Different health authorities seem to offer different testing. Also tests are done if another problem is suspected. Lots of tests are done if you on a trial.
Me. I was immunotyped at diagnosis and since then , nothing even though I have had FCR. I live in the South West UK. Sometimes I'm curious and want to know more as people in the USA do and other times I do not want my "Best before date" and just want to get on with my life without worry. I make future plans and life goes on.
The time of treatment decisions is as bad as the time at diagnosis.
I and others would recommend the Leukemia Specialist In Milton Keynes. Dr Dungarwalla. He studied at Royal Marsden and co wrote a paper on CLL with Claire Dearden who speaks regularly at CLLSA conferences. He has a website if you want more info. moezdungarwalla.co.uk/
I was only diagnosed a few months ago but am fortunate to live near to the excellent team at the Churchill hospital in Oxford under Dr Anna Schuh. She will be the keynote speaker at the CLLSA conference in Oxford this coming September. At my first 6 monthly check up I asked about genetic testing and prognostic markers ( it's a steep learning curve !) but was told that there is no point in having these tests until at the point of needing treatment. Hope all goes well.
Seems there are few options in the SE outside of London, but I have found a Dr Claire Dearden at The Royal Marsden (Sutton, Surrey), who is a big contributor to the forum video presentations. In the meanwhile I think I will ask my current hematologist for some additional tests when I next see him. The fact is that apart from the lymphadenopathy issues and tiredness and fatigue which waxes and wanes I feel pretty good. I don't seem to be effected by lots of infections (touch wood) like some do, so in that respect I consider myself lucky.
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