CLL Support Association

One year on

One year to the day since I was told and the ensuing double shock, first that I had cll then to be told it had been discovered two years earlier unbeknown to me. Anyway pretty much got my head round it, fit as a fiddle , loads more exercise since I retired. Second of my six monthly blood tests today, February my wbc was 15 , up 1 from last July, described by my gp as static. I guess there is a margin of error in these tests , so that 14 and 15 are close enough to be considered that .still always the unanswered question, ' what's going on inside me ? Is it revving up ?

Best wishes to all fellow forum members.

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Wonderful news Nigel! Isn't it amazing how at the time of diagnosis we can only see the dark and are so scared....and look at you one year later! Moving on, staying healthy.....you've got this!

(And I'm sure some other forum member will be able to advise on your numbers. I still consider myself a newbie.)

Best wishes to you as well.

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Definitely static and low numbers. Lucky you. Don't just keep an eye on wbc but Hb as well. Lots of cells with different names but it's only these and absolute lympocycte count that most untreated people track.

Hopefully the bloods will stay very slow or static for many years. I was 200 or 200,000 at diagnosis. Didn't know I had CLL and they said I'd probably had it 10 to 15 years. Treated when Hb fell below 10 or 100.

Keep active and enjoy life.

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Hi Nigel

you are looking good for years yet, however if you want to monitor the trend, it will help to monitor lymphocytes known as ALC absolute lymphocyte count. This usually gives a better indication and is the figure I think most of us use.

You will see it referred to in a number of posts and replies.

Best always

Bubnjay1

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Hi. Im like you. Nearly one year for me and wbc stable at 15. Again a shock at diagnosis and had had lympocytosis for years but it hadnt been explained. I now keep healthy and exercise more. Ive learnt mindfulness which has helped and i maintain a positive attitude as I cant change the diagnosis so no point getting too stressed about it. Your lucky to be retired. Im 54 and years left. I do struggle with fatigue.

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Wish I'd looked closer at the screen results if my last test , so many numbers my brain froze , will try and remember next time , in the meantime I'll take comfort from the relatively low wbc and it's indolent progress and trust two consultants at the Churchill opinion that I may never need treatment and try to stop what I call those 3am thoughts that it's suddenly taking off like a rocket inside me . I always did take care of myself, eat a good diet and lead a very active life , this has made me even more focused on my fitness , and appreciate life even more .

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Hi Nigel

just ask for the print out of your results, I always ask for them and they always hand them over with no problem. I told them I keep a record and they seem happy that I take an interest in what is my own health situation.

Do ask the consultant about anything you don't understand.

The waking may cease as you understand that there is no imminent threat hanging over you. Enjoy yourself keeping fit, I know I felt so much better when I exercised.

Bubnjay1

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Thanks for the reply I don't see a consultant , not even a doctor , just a phlebotomist at my local surgery who takes the blood. So I don't get to see the results , only saw the February figures when the screen was at the right angle , I've decided that if there was something amiss they'd contact me , they're not going to do anything until I show some symptoms , hopefully never or by which time they've found some less aggressive treatment .

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Nigel-Q, hoping that you never need treatment. Wishing the best for you.

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That's an absolutely tiny increase in your wbc and could be due to lab differentials. Honestly, to go from 14 to 15 in six months is of no significance in terms of disease progression Nigel.

As others have said, other blood results are of greater significance but I'd be surprised if your ALC is yet in double digits. It's all good so relax! A very indolent presentation as your doctors have told you. You can see switch off the 3am worry alarm! :-)

My GP didn't tell me either until my levels were higher than yours now. His view and that of the haematologist was that it could be MBL (monoclonal B cell lymphocytosis) that may never develop into CLL. I'm actually relieved that they spared me an additional few years of worry. My WBC is rising about 10 points every 4 months just to set things into perspective.

You sound in good shape, your doctor's are happy and your blood is behaving. It's time to release the angst and listen to those Consultants who believe you may never need treatment! (They don't tell me that!)

Best wishes,

Newdawn

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Nigel,

My aunt was in her early 60's when she was diagnosed with CLL. She was still on W&W when she died at 94.

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