CLL Support Association

Re: Extremely High White Blood Cell Counts (Over 150,000)

Hello, All!

I am new. I am here for my dearest brother who was diagnosed with CLL a few years back. His WBC is now so high that a hospital has to read the test. We don't know for sure what it is at the moment because of this process, but we think it is probably around 160,000 to 180,000 (just an estimate). The limit for the lab they were previously working with was 150,000.

My question is obviously with regards to WBC levels. What is the highest anyone has seen or experienced here? My brother seems to be just a little more tired than usual, but he also thinks this could be because we are having a record heatwave. He doesn't know positively that it has anything to do with his leukemia because he is usually more tired in the summer due to the heat (he does not have air conditioning either). He just recently got a bone marrow biopsy and a CT scan for spleen involvement, etc. We will find out more soon, but his RBC is still above the danger level.

Just trying to get an idea how high the WBC can go and someone is still fine with few serious or debilitating symptoms. Thank you!

14 Replies
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While your brother does have a high WBC, he doesn't hold our community record. Some members have exceeded his count by 100,000 or so. Dr Thomas Kipps has reported a record CLL count of 1,400,000.

Read this post, which should reassure your brother somewhat: healthunlocked.com/cllsuppo...

A high CLL count is not a trigger for starting treatment: healthunlocked.com/cllsuppo...

Neil

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Mine went up to 258,000 when I had an infection.

High WBC is not a reason in itself to start treatment.

Your medics will look at this in conjunction with other more troublesome symptoms such as nodes, night sweats, fatigue etc as well as how he feels generally.

My WBC was 130,000 when I started treatment in 2015 but my platelets were low around 70-80 but I could have gone on without treatment but decided that the trips to hospital every 4 weeks were ruining my social life and after putting up with these trips for 2 years I decided to start treatment at that stage alongside my medics. My other symptoms such as swollen nodes,spleen etc were not giving me much problem really. However, my bone marrow infiltration was 97% .

Wait and see what the test results say and discuss with his medics.

Geoff

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Hi,

May I ask what sent to hospital in the first place?

You said every 4 weeks, for what?

I mean, did you have some bad symptoms?

Thank you

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Tedro

Because I was for around 18 months on the verge of treatment due to low platelets etc I was being monitored every 4 weeks. Each time whilst clinically near to needing treatment, we decided because I was feeling well and still playing golf etc. that my consultant continued a Watch and Wait . The fear was that treatment side effects would make me feel worse. In the end going to hospital every 4 weeks was interfering with my quality of life as I couldn’t plan long term due to constantly being near to treatment. In the end we decided together to start FCR.

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Hi my WBC reached 480,000 when I needed treatment. As said before try not to focus on numbers as long as he is feeling well.

BW Jacqueline

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Mine was stable at 265,000 with no lumps or bumps. Didn't seem to affect life in any way. Treatment happened when HB fell below 10 continually over a period of 8 months. This was because the lympocytes were crowding out the cells in the bone marrow, I was told. You use the words "danger level". You are not in danger you are being monitored and cared for. I think you fear treatment. Don't.

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What is "HB"? please.

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HB is an abbreviation for haemoglobin - the measure of our blood's oxygen carrying capacity.

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High WBC is almost never a reason to treat. And there are many patients with much higher numbers. Follow the trend.

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Thanks so much for the replies! That really helps so much! I will post an update soon when he gets results from his tests. This is a great group, thank you.

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My WBC is over 241,000 and still on w&w.

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does anybody get the ZAP70 test?

why or why not?

anyway, my feeling is: no symtoms, at least no distressing symptoms, so I wish not to get bone marrow biopsy. Why should I, without symptoms!

(63yowm over a few years, i guess, my wbc -- which I would have never known if not for one-time checkup -- is 145,000 now. last July it was 80,000.)

Thanks!

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My wbc is 500,000 I started Imbruvica 3 1/2 months ago. The lymph nodes and spleen were slightly enlarge so my doctor felt it was time to start treatment He had been watching me for the last 12 years. A recent CAT scan showed reduction of the lymph nodes and normal spleen size. I'm now having swelling in my left foot, ankle and calf and redness. No other side effects. Has anyone else experienced this

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I am a CLL patient and WBC count is 215k and no treatment as of yet.

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