Watch & Wait: large dip in abnormal values CLL

I was diagnosed in 2010 and am on watch and wait. Slow but steady increase in the 2 abnormal values from 2010 until Sept last year. Just a few marginal improvements at times usually autumn. GP’s have been dreadful in organising routine bloods so this time it was June 2022 and they both improved (total white and lymphocytes) down to levels in 2015. This level of change seemed odd and I’ve asked twice to go back to the specialist who said I could do so if ever I was worried but GP feels not necessary. I’ve been let down by GP since covid, wrong info and not originating regular bloods. I’d either like reassurance or to find a way to insist on seeing the specialist. My figures are still not bad. Some way under the 400 level my specialist said 10 years ago would trigger more treatment and no sudden swellings etc…

1 Like

Hi @nelletap as I have just said to you in your other post life really is a stressful struggle sometimes.
When I was first diagnosed with Chronic lymphocytic leukaemia (CLL) in 2003 the GP said to me 'to take responsibility for your conditions and I am now on 6 mthly blood tests and I go into my surgery and ask for an appointment for my regular 6 mthly blood test and the nurse often asks ne what tests I need.
I also take my GP’s words to mean telling other medical departments and the dentist etc.
Yes, my results fluctuate too.
Personally with Covid cases rising at the moment I am avoiding hospitals and GP surgeries !!!
I find the pleasantly assertive approach works best for me.
Please let us know how you get on and look after yourself.


Thanks, Erica. Good advice. I like to take responsibility but find the med staff have almost been against it. eg when they told me I had impaired immunity and I asked what I could do to help myself, they said ‘but then you’d be defined by your illness’. But I will act on your advice. Pleasantly assertive sounds just right.

1 Like

Hi @nelletap I have been thinking about you, any news and any luck with the ‘pleasantly assertive’?
Look after yourself

I’ve tried pleasantly assertive but perhaps my follow through was weak. Whether or not I had the 5th jab became the important issue plus our surgery has had a speight of staff affected by Covid. I have had a blood test which seemed to be good and my GP insisted I was very stable. The two things made me feel I should bide my time a little longer… I do appreciate your enquiry as I am rapidly finding Blood Cancer UK my preferred way to get info and advice.

1 Like

Oh @nelletap I forgot about the follow through bit !!
Great news that your blood tests seem good and that you are stable.
Celebrate the good news and be kind to yourself