UK CLL Forum, UKCLLFORUM

what to expect

Topic Made On: Dec 17, 2010 05:27pm
kestrel

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Hi,everyone I went for a CAT scan last Monday,blood test Tuesday,and now have got a phone call to-day friday from my consultants secretary saying my appointment for the 30th of this month has been brought foreword to next Tuesday 21/12/2010,and that my white blood cell count has risen to 210.I'm guessing this could mean chemo time has arrived,and I wondered if anyone could tell me what to expect of give me any advice.My appointment is at Basildon hospital.Doe's anyone have any knowledge of the standard of treatment here being its been in the news so much for being below standard.I would appreciate any feedback or advice.Lee




Replied On: Dec 19, 2010 11:02am
Robert Cork

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Lee

I often say this, but having a high white count of 210 is not necessarily, on its own, a reason for treatment. The more important counts of HB and Platelets are often the indicators for treatment. So if your HB is showing a steady decline towards the 10 mark then this might be a reason for treatment. Also if you HB is around 10 then you might be noticing a shortness of breath or lack of energy. The same goes for Platelets, even though you may not notice this unless you bruise easily, but if mine were approaching the 75 level and showing a steady decline, I would be thinking about treatment.

A couple of other points that can be indicative of the need for treatment (i) weight loss (ii) night sweats.

I am unable to help in regard to the Basildon Hospital, but there is always the option to see a CLL specialist, there are a number in your area, also this is one of your rights in the UK.

Finally, and once again I always say this, make sure that you have a full appraisal of your blood, i.e CD38, IgVH (not so necessary for treatment options), Chromosomal abnormalities (17p13 Deletion (TP53 gene), 13p14 Deletion (ATM gene), 11q23 Deletion, 6q21 Deletion, 12q Trisomy).

Best of luck for Tuesday. (let us know how you get on).



Replied On: Dec 21, 2010 07:55pm


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Hi,Robert thank you for your reply.I went to see a haematologist to-day at Basildon hospital a Dr Pluta who was a locum.I went with all the questions in my mind,but then seemed to go blank,and before I knew it he was talking away in a sort of accent I found difficult to understand.However he did say he thought I was a candidate for treatment with FCR,and said there would be a board meeting of the haematology board to decide if I was going to get treatment.I have to phone the haematology ward next week to find out if treatment has been granted and when it will start.I think he said I have a large mass of the lymph nodes in my lower stomach.I've been given Allopurinol to start immediately.I dont seem to have any of the data of a full blood appraisal like the ones you suggested.I had to ask for the chemistry haematology report.I'll list just the high ones on the list.WBC,210.6.Mean cell volume 101.4..RDW 15.6..Lymphocytes 201.5..monocytes 2.11..Eosinophils.0.7..Urea.8.3..Total bilirubin.30..I have all sorts of questions to ask,but it felt like a conveyor belt at the hospital with people waiting to see the specialist,and I suppose I felt there was not enough time for me to ask all the questions.regards Lee



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