WBC treatment level

My last blood test 2 weeks ago showed my WBC to be72. 6.My next test is next Wednesday(17/03/21).At what level should I require treatment. I don't think my practice is up to speed with this condition.

[AussieNeil Partner Administrator]

There isn't a WBC, or more accurately, an Absolute Lymphocyte Count (ALC), that triggers the need for treatment. We have members in Watch and Wait with several times your WBC who are doing fine. This pinned post covers the triggers for starting treatment: healthunlocked.com/cllsuppo...

If your absolute lymphocyte count doubles in under 6 months when it's above 30, as yours is, then CLL specialists look for other, confirming reasons that your CLL is on the move, before starting treatment. If these can't be found, they may just arrange for more frequent blood tests (perhaps as your specialist is now doing), as your ALC may stabilise, so that treatment might still be years away.

This is why you check the ALC, not the WBC: healthunlocked.com/cllsuppo...

Neil

[Hidden in reply to AussieNeil]

Thank you very much. This has never been explained to me.

[JigFettler Volunteer]

Neil has summarised well the issues for treatment triggering.

I was treated (FCR) with a L count of 80,000 - the Haematologist assuring me 200,000 is known with no treatment planned. My trigger to treatment was lymph node size.

The point I wish to make in addition to AussieNeil's is to encourage keeping your own record of blood results. Learning about what they all mean helps, and you can see IF doubling time is getting faster. Other treatment triggers such as Hb and platelet levels are also important. Remember "trends" are important too. In my case the Hb drift down over 3years watch and wait, while never low enough to trigger treatment itself - it was showing me that treatment was on the visible horizon.

My Hb was 130 at treatment, Very soon after FCR started went up to 155! Presumably more space in my bone marrow for red cells to be made, with fewer lymphocytes blocking "red cell synthesis"!

Jig

[GMa27]

My WBC was 225,000 before I needed treatment, which was in my 12th year of W&W. My nodes got bigger, bone marrow more crowded, anemia set in.....I felt fine but it was still time to treat.

💕

[210savannah]

My WBC was only 24 so doctor at first said we would probably watch and wait. However, I had enlarged nodes and having night sweats and weight loss. FISH test revealed i had 17p deletion. PET/CT scans revealed mass of enlarged abdominal nodes. So I was started on Ibrutinib.

[64lusso]

As all have indicated everyone is different, I was cruising along well into my 4'th year of watch and wait and made it to about 75,000 when my white count suddenly took off. I'd never had enlarged nodes, night sweats or anything else that held me back from daily work and activities. In a matter of weeks I'd jumped to 125,000 and then I got anemic (AIHA) which doctors insisted wasn't necessarily caused by CLL (but I'd never had it before so where in the H do you think it came from?) quickly followed by severe shortness of breath. Bottom line, keep up with your numbers as well as how you feel or anything unusual going on and report to your doctor immediately. If you don't have confidence in your doctor please try to locate and go see a CLL specialist, not to replace your doctor, but to add to your knowledge and confidence you are on the right path. If you've yet to do that do not wait until things get out of control, do it soon! I'm now 4 years past the scary AIHA episode, which was followed by B+R treatments and now on Ibrutinib and still on a very normal life path at almost 70. Good Luck.