confused

[happymac]

HI EVERYONE

SINCE THE START OF THIS YEAR MY WBC HAS BEEN GOING DOWN AT ONE STAGE IT WAS 126 AND TODAY WAS 79.

WAS DIAGOSED WITH CLL 5 YEARS AGO AND HAVE BEEN ON WATCH AND WAIT. APART FROM A FEW LUMPS IN NECK NO OTHER SYMPTOMS.

WBC GRADUALLY BUILT UP UNTIL IT WENT OVER 100 SLOWED DOWN PEAKED AND NOW THIS DROP.

HAS THIS HAPPENED TO ANYONE ELSE AND IS IT NORMAL.

CHEERS HAPPYMAC

[AussieNeil Administrator]

Hi Happymac,

You may be less confused if you track your lymphocyte count (ALC) rather than your WBC. Your WBC count includes all your white blood cells - neutrophils, lymphocytes, basophils, eosinophils and monocytes. These all vary with illness, allergic reactions and other factors. Your lymphocyte count only includes B-lymphocytes (mainly CLL cells) and T-lymphocytes, so it gives you a much better picture of how your CLL is changing:

healthunlocked.com/cllsuppo...

Even your ALC can jump around significantly - that's why haematologists monitor the overall trend. Also, remember that the amount of your tumour burden in your blood may be a very small amount of your total CLL tumour burden. It depends on your particular CLL characteristics. Some of us have enlarged spleens and lymph nodes with very low ALC. If you have the SLL form of CLL, then you may have no CLL cells in your blood.

Neil

[happymac in reply to AussieNeil]

THANKS NEIL

JUST CAME AS A SURPRISE THAT AFTER FIVE YEARS WATCHING THINGS RISE STEADILY ,THE FIRST FIGURE MY SPECIALIST GAVE ME (THINK IT WAS WBC) THIS TIME SEEM TO HAVE COME DOWN DRAMATICALLY.

I AM A BIT OF A WORRIER AND STRAIGHT AWAY THINK SOMETHING NOT RIGHT.

ALWAYS BEEN HEALTHY DURING THE FIVE YEARS .ENLARGED NODES IN NECK SEEM TO BE LESS NOW AND SMALLER.

NEVER HAD ANY OTHER SYMPTOMS AND RECENTLY BEEN TRAINING FOR 10KM RUN SO LOST A BIT OF WEIGHT.

DON'T KNOW WHY I'M WORRYING AS THE DOCTOR WASN'T A BIT CONCERNED.

ONCE AGAIN THANKS

JIM

[Cllcanada Top Poster CURE Hero]

Regressions are documented in the CLL medical history... in my case, my ALC dropped from 132K to 42K... and plateaued there for nearly two years...

As Neil points out... the tumour burden probably hadn't decreased, just changed locations... still it made me feel good...

~chris

[happymac in reply to Cllcanada]

THANKS CHRIS AS I SAID TO NEIL I AM A BIT OF A WORRIER

WAS JUST WANTING TO KNOW IF DROPS IN FIGURES WERE NORMAL

LOOKING AT YOUR ALC FIGURES SHOWS IT IS.

FOLLOWING THE EQUATION I WOULD SAY MY ALC HAS GONE DOWN FROM ABOUT 95 K TO 60K.

THANKS

JIM

[dkay]

My lymphocyte count also went down when I lost 40 pounds through exercise and (slightly) better diet (after many years of being a complete slug) . A friend who was diagnosed with CLL about the same time as me started running long distances (marathons), lost weight, and his counts went down. When he ran less over the winter, his counts rose, then dropped after he increased his running in the spring. Adipose tissue is inflammatory, so the correlation between weight loss and lower counts makes some sense biologically. I think there are limits to what weight loss can do for CLL but it certainly seems to help some folks, and exercise is good for us in so many ways,