Info on CLL

[Angela_G]

After 10yrs my white blood count has increased from 62.7 to 93.4, and the lymphocytes from 52.5 to 80.5, this is the biggest increase I have experienced. Does anyone know what this means? Should I be worried?

[JohnnyP]

Hi Angela- I've had CLL for 2 years and on Watch & Wait. In the U.K. Your question is a good one. I'm not at all sure of the answer because it's something I certainly would like to know as well ? My white cell count was 32 a month ago and I asked the specialist at what stage does it have to rise before I have treatment? His answer was a bit vague for my liking as he said it's not the number so much that counts more the Rate at which it's going up. I said you mean if mine suddenly went to 64 or doubled you might be worried- he said yes exactly! Here they want to get you in and out in double quick time and you never see the same quack twice- mores the pity. Treated like a number only.

I hope others out there can answer this one properly- as like Angela I'm a bit anxious as well.

Thanks -

Johnny

[LizofLondon Champion in reply to JohnnyP]

Hi Fellow CLL folk

As I understand it, we can have loads of white blood cells and still be ok.

The problem arises when we have so many that they push the red blood cell and platelet counts down.

It seems that no one can predict the rate of increase of white blood cells, so it follows that it must be possible that one can go for years without worrying increase. Or it can happen quickly. My count has gone from 38 when first spotted to 120 ish 18 months later - and my consultant has described that as 'slow' though it was significant they doubled within a year.

I'm also encouraged by the treatment of CLL. I count my blessings that I'm on 'watch and wait' rather than being diagnosed and then treated much later.

In summary: its unpredictable which is difficult to live with sometimes. But being on watch and wait is reassuring - we are being looked after.

Good luck and hope you are feeling ok. I'm feeling ludicrously well! Ridiculous!

[JohnnyP in reply to LizofLondon]

Thanks for that Liz. That certainly reassures me !

All the best Johnny x