How Long for BTK Inhibitor to Reduce WBC. - CLL Support

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How Long for BTK Inhibitor to Reduce WBC.

MyCLLJourney profile image
10 Replies

I started Brutkinsa Aug 28. On Sept 12th, my Dr visit showed that my WBC doubled from 14K to 28K (I should note that the reason I was started on it so early is because I previously contracted Cll caused encephalitis). I have my next Dr appt Oct 3rd. I'm curious how long it has taken other people on a BTK inhibitor (e.g. Ibrutinib, acalabrutinib, zanabrutinib) for their WBC to be down to normal range again? I'm very watchful for signs of encephalitis, but I'll feel more comfortable once my WBC is within the normal range again.

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MyCLLJourney
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SofiaDeo profile image
SofiaDeo

We all can respond differently, at different rates. And it's lymphocytes they look at/monitor, not WBC, in addition to a number of labs/symptoms. Lymphocyte counts may increase before they decrease, too.

MyCLLJourney profile image
MyCLLJourney in reply toSofiaDeo

I really haven't had any symptoms from CLL ever, except in 2021 I had CLL-related meningo-encephalitis where my white bloods cells went past my blood- brain barrier. I do NOT want that to happen again. That's why I asked about WBC. But, good news, after my Dr visit today, my WBC went down. I've been on Brutkinsa just short of 5 weeks. No side effects and it looks like it's working well. I haven't seen my CBC results yet though, only what the Dr told me.

AussieNeil profile image
AussieNeilPartnerAdministrator

I've attached a plot of how the absolute lymphocyte count changed for 11 patients on acalabrutinib/Calquence. Brukinsa would cause similar changes. Note it can takes 2 to 3 months before the ALC drops below the ALC prior to starting treatment.

Further to SofiaDeo 's helpful reply, looking at your lymphocyte count rather than your WBC is very important, not only because that's the most accurate way to monitor the effectiveness of your treatment, but because as your lymphocyte count approaches normal, your neutrophil count variations become the dominant influence over your WBC. (Keep in mind that your WBC is the total count of 5 different white blood cell types.) Neutropenia (low neutrophil count) puts you at increased risk of infection, so should also be monitored. Your WBC is already so low that variations in your neutrophil count could soon be the major influence over your WBC, given the healthy neutrophil range is between 2 and 8 and CLL treatments commonly cause neutropenia, but also clear our bone marrow infiltration, so your bone marrow can make more, eventually (hopefully) boosting your neutrophil count. Don't check percentages either, or you can be fooled, as I explain here: healthunlocked.com/cllsuppo...

Neil

Considerable variation in time to peak ALC and when ALC drops below starting ALC.
MrMidnight profile image
MrMidnight

My lymphocyte count was 84.9 on 18 April 2016 and it took until 26 November 2018 to become normal — a long slow descent!

Ibru profile image
Ibru

when Ibrutinib was started, levels went up for about six months before they started to decline.

gardener58 profile image
gardener58

Started Brukinsa on 9/14/23 with lymphocytes at 187K, and two weeks later my labs showed they were at 87K. My doc said that is a rapid decline. Stay strong!

MyCLLJourney profile image
MyCLLJourney in reply togardener58

I'm glad to report mine has lowered too after 5 weeks.

Kvb-texas profile image
Kvb-texas

Here is how my WBC reacted after starting Acalabrutinib. You can see that my experience is similar to yours. Nothing to be alarmed about.

Aug 26 2021- wbc=19.9 (at start)

Sep 10 2021 - wbc=43.8 (doubled)

Sep 27 2021 - wbc=27.7

Oct 25 2021 - wbc=5.1

Today, Oct 2023 -wbc=4.6

I wish you well. Acalabrutinib is a very effective treatment for most.

Kvb-texas

Barrystreets profile image
Barrystreets

I don’t know a lot but my dr told me right out the first three months acalabrutinib that my numbers would get higher than start to come down after. Before you started treatment your lymphnodes were probably enlarged from the lymphocytes hiding inside them. Once you started treatment the acalabrutinib actually chases them out of the lymphnodes and into the blood stream and starts attacking them. This is exactly what’s happened to me iam now on my 4th month and all my test levels are trending in the right direction and get closer and closer to normal every month. Hope this helps.

DUKELAXDAD profile image
DUKELAXDAD

I started Brukinsa on 8/23. My WBC was 221k. It went up to 345k by 9-10 but was down to 178k by 9-19. So it goes up and then back down. My neutrophils went to zero by 9-10 but back to 5.4 by the 19th. Hang in there and don’t lose hope. There are great drugs out there now and more coming.

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