Just curious

[Createdpath]

what was your white blood count when you started treatment? I know there are other results that determine just wanted to know wbc.

[Newdawn Administrator]

The absolute lymphocyte count (ALC) is a more reliable indicator of disease progression but formal guidance states that as a stand alone measurement, it should never be used solely to instigate CLL treatment. Obviously if the ALC is doubling within a 6 month period (once over 30), and a clear doubling trend is established, disease progression is becoming evident and this is one of the criteria for treatment. We’ve had members on here still treatment free with an ALC of 300 (300,000 US measurement). So many other factors come into play but WBC isn’t usually one of the key indicators. More aggressive bio markers can influence the timing of treatment too as can constitutional symptoms like debilitating fatigue, frequent infection etc.

My ALC was 129 (129,000) when I started treatment but it was splenomegaly and extensive lymphadenopathy (enlarged symptomatic spleen and lymph nodes) that drove the timing of my treatment.

Regards,

Newdawn

[Feelsolow]

My wbc was 728 thousand, yes thousand, but I started treatment because my haemoglobin dropped to 36....and need 6 bags of blood...started calquence 2 month ago and all bloods in normal range now and can't feel or see any nodes !

[SofiaDeo]

First treatment, my lymphocyte count (I usually don't look at my WBC, just lymphocytes and neutrophils) was mmm 285K? That was a decade ago. The last treatment, my lymphs were around 130K I think. I go by other symptoms and cell measurements, not my lymphocyte count. When I feel awful and am so ill I can't do laundry or feed myself, I treat the CLL, regardless of what the labs say. My variant does double every 4 months so no one has ever challenged me on this/talked about "waiting". I have never had a Watch and Wait. When my CLL is active, I know it. I can't sleep without waking in a sweat, I am exhausted, I can barely take care of myself.

[Poodle2]

My lymphocytes were around 145K but I started because of my anaemia, splenomegaly and being very symptomatic in general (fatigue, reoccurring infections, night sweats).

[Gradyboy]

24000. Large lymph nodes

[GMa27]

225kBecame anemic

Nodes got bigger

12 years W&W at that time.

[Shepherd777]

WBC was about 37,000, but it was the enlarged lymph nodes the size of walnuts in my neck area and even larger ones apparent from a full body scan, plus drenching night sweats, and quality of life issues. The WBC was never much of a consideration.

[Murmeli]

mine was 202000 and dropped with first O i.v. to 2000. Reason for treatment was drop in hemoglobin to 10 - tired, less endurance at sport

[stevesmith1964]

3.6

[richutchens]

116000. Treatment began when my spleen became enlarged . Stage 2.

[michaeledward]

280,000,000

[Big_Dee]

Hello Createdpath

I asked my first CLL doctor how high my WBC would trigger treatment. His reply was somewhere over 100. Google had suggested WBC 100. My first treatment started at 197+ WBC and second treatment started at 42+ WBC. I say WBC+ because my ALC was doubling at 2.5 months and blood testing was week or so before starting treatments. There were other things that prompted me to have treatment. so not much help to you. Blessings.

[Pearlpink]

Hi. Mine was approx 70,000 but it was dropping HB and rapid splenomegaly and fatigue that drove mine.

[DawnRedwood]

650,000 and it went down to normal after 3 months on Imbruvica.

[Vizilo]

WBC 25,000; ALC 17,000 . Treatment started because of severe neutropenia (under 0.5 for an extended period of time)