UK CLL Forum, UKCLLFORUM

newbie diagnoised

Topic Made On: Apr 13, 2015 11:34am
mush1956

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hi I am Mush1956 58yr old female i was diagnosed on 16/02/2015 from a blood test that was done on 02/09/2009 the Drs decided that they wouldn't bother to call me or tell me there was some thing wrong with my results ,I had my 3 yearly breast screening in 2012 they recalled me but then said all clear(got my dvd of this screening I had enlarged nodes ) had my next breast screening done 07/01/2015 was recalled and had biopsies done on the nodes in my arm pits told I had Non Hogkins Lymphoma appointment made to see haematologist 16/02/2015 were I was told I have Chronic Lymphocytic Leukaemia sent for first full blood count since 2009 results WBC 59.7 Haemoglobin 140 platelets 234 RBC 4.85 Red blood cell distribution High 14.5 Lymphocyte High 51.0 Monocyte High 1.5 I have had a CT scan from this I have an enlarged spleen at 15.4cm in bipolar length the Haematologist ( who has NO bed side manner ) said you have it in your blood your bone marrow you have nodes all over your body and an enlarged spleen but its just W&W I am so tired cant sleep as I find it wait and worry and not told very much about it . I walked out of my second meeting with this man as he just blurted out the statement it was all over my body can any one tell me are my results good bad or indifferent




Replied On: Apr 14, 2015 09:37am
chandaj42

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I am absolutely appalled by the treatment you've received. You should change Consultant to a more understanding and sympathetic regime. I don't know in which part of the country you live and are being treated but, if it's of any help, I am under the care of Heartlands in Birmingham, which is superb. I'm sure, too, they'd be appalled by the reception you've been given.

W&W is common and although your bloods look high and Hb fairly low, the hospital is the best judge; as far as I know, there is no advantage to be gained by starting treatment early. My symptoms were similar but 23 years after being diagnosed (yes, that's right - it was in 1992), I'm fit and well. I had chemo in 2006 and again in 2010 and am on a daily dose of Ibrutinib. OK, bully for me, but at least you know things can and do get better. So, chin up. My Hb is now 16.8 from 15 last Autumn. My platelets are 130/140 ish so yours is better!



Replied On: Apr 14, 2015 08:50pm
mush1956

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thanks chandaj42 I live in Kendal in the lake district and attend Lancaster hospital to see the haematologist Mr Howarth . we don't have a CLL specialist around here just haematologists that are general blood cancer specialists (not just specialise in CLL) between the Drs at the surgery we were at till 3 weeks ago and the breast screening team I feel so let down with the NHS and having to find every thing out for myself but after reading about other people on here Im finding out symptoms that I have ie tiredness and pain in my legs thanks for replying to my moaning



Replied On: Apr 15, 2015 09:05pm
Pennycam

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Mush- you can go anywhere in the country for care as long as you don't mind the travelling. Talk to your GP about a referral to another consultant. Kendal is not too far from Newcastle or Liverpool both of which offer specialist care by CLL specialists and provided excellent care. I hope this is helpful.



Replied On: Apr 16, 2015 07:30pm
mush1956

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hi does any one know what the CLL specialists at Liverpool or Newcastle hospital are called thanks



Replied On: Apr 17, 2015 07:50am
Pennycam

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Newcastle NCCC at the Freeman Hospital is DR Wallis. At Liverpool royal it is Prof Pettit.



Replied On: Apr 17, 2015 08:54am
steve y

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Hi Mush1956,
I can only reiterate what others have said
My old GP diagnosed my cll from a routine blood test, I had just moved away to Coventry from my old hometown of Daventry therefore I had to find a new GP and consultant, my old doctor, who I had great respect for couldn't emphasise enough how important it was to research and for me to find a good practice, ideally a teaching practice and research consultants, I was luckily enough to find Dr Bokhari from the Walsgrave, Coventry and a good GP who has an interest in Leukaemia's.

I read with interest the responses to the new drug Ibrutinib It is reassuring to know there is a good deal to hope for in the future, good luck to all who on on new trials, keep us posted and good health to you

Steve, Coventry



Replied On: Apr 17, 2015 12:22pm
mush1956

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thanks Pennycam will be asking ASAP for my Drs to refer me to either of them I think Liverpool might be better as when it snows Stainmoor closes so Liverpool maybe best so here goes my new Drs surgery seem really good Im sure they will refer me thanks for the info Julie Kendal



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