Living with CLL

[Pablo123]

Hi Everyone, can anyone tell me if a WCC of 229 is to be worried about. The powers that be still don't want to treat. Is this normal? No B symptoms either. Thanks for any help, quite new to this.

[AussieNeil Partner Administrator]

Pablo, in the absence of any other symptoms, that count should not be a cause for worry. If it is growing rapidly, then I'd expect your specialist would be discussing treatment options with you. Read the pinned posts How high can you go and what does it matter?

healthunlocked.com/cllsuppo...

and

When to Treat:

healthunlocked.com/cllsuppo...

Neil

[Cammie]

Great advice from Neil!

If no other symptoms don't worry!

Geoff

[Pablo123 in reply to Cammie]

Thanks Neil and Geoff for your time. great!

[Reinhard]

I have had wbc higher than 200 000 for 15 years and I am still w&w.

Reinhard

[Pablo123 in reply to Reinhard]

Hi Reinhard, what you said is very reassuring, however at routine clinic apt recently, rushed into oncology there and then for more bloods bone marrow aspiration/biopsy and 4 days rest and relaxation! Told chemo (trial) by end of week. Then after big meet with all senior staff told no ok you can go home now and we do more bloods in 4 weeks! How frightening for both of us. Must be honest don't understand the half of it, but find you people out there encouraging. So thank you all.

[AussieNeil Partner Administrator in reply to Pablo123]

Pablo, I'm relieved to hear that you escaped chemo because to me, that would indicate an unfamiliarity with treating CLL. This matter of treating on the sole basis of a growing Absolute Lymphocyte Count came up in a post again today:

healthunlocked.com/cllsuppo...

There are B-Lymphocyte cancers where high numbers are a valid reason to start treatment on their own, but thankfully for us that's not the case. (B-Lymphocytes can vary considerably in size and our clonal cancer cells are rather small, so do not on their own cause problems in the blood stream.)

If there's a change of personnel where you go for assessment and you again get the 'we must start treatment very soon' despite feeling fine, do ask for a second opinion elsewhere before starting treatment.

Neil

[Pablo123 in reply to AussieNeil]

Thanks Neil, you talk sense. Why cant these doctors talk a language we understand?