Treatment for CLL: Any experiences with Brukinsa (zanobrutinib)?

Posted by siagolfer @siagolfer, May 21, 2025

Started therapy for CLL after 2.5 years of wait and watch with my excellent doctor at Mayo and local haematologist.This was predicted based on prognostic factors of age(77 now) IGHV unmutated and size of lymph nodes by CT scan . 5 out of 10.No TP 53 disruption
Until that time many background tests done including FISH, CT CBC weight loss etc
Before starting therapy had CT scan, bone marrow sampling,skin check, EKG etc
Doctor gave me a choice of Brukinsa( Zanobrutinib) or combination of Venetoclax plus obinutuzumab both being equally effective in my case.l chose the capsule therapy vs Infusions for convenience.
The doctor stated me at the half dose of Zanobrutinib ( Brukinsa ) 80 mg twice a day two weeks ago.
So far no side effects. Taking allopurinol and acyclovir also.
In two weeks my WBC has gone up from about 90 to 150 and platelets down from 100 to 80.This is as per expectation since the cells from my nodes are now in my blood stream and BTKi impacts bone marrow (platelets)
Sizes of my nodes has shrunk significantly
Uric acid on target.
I have to watch out for bruising or bleeding.
So far so good.No changes in diet or lifestyle.
Name of game is stay positive!

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Profile picture for bochos @bochos

@clutch
After getting two infusions of blood and 4 infusions of Ribitoux things are back to normal.

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@bochos
I was actually asking about "wait and watch" in early stages. Do most oncologist agree on this practice?

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I've been prescribed Brukinsa 80mg (zanubrutinib) 4 capsules daily plus Allopurinol tablets 300mg 1 daily plus Co-Trimoxazole 160mg/800mg 1 tablet twice a day on Mondays and Thursdays only. Does anyone know of the side effects I might have while taking this medication please.

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Profile picture for tezy15plus5 @tezy15plus5

I've been prescribed Brukinsa 80mg (zanubrutinib) 4 capsules daily plus Allopurinol tablets 300mg 1 daily plus Co-Trimoxazole 160mg/800mg 1 tablet twice a day on Mondays and Thursdays only. Does anyone know of the side effects I might have while taking this medication please.

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I have been on Brukinsa 80X2 per day( half dose due to age 77) and two tabs acyclovir as per advice from m Mayo haematologist
I was on allopurinol for the first three months but stopped once my lymph nodes got significantly less and chance of TLS reduced

So far no major side effects except earlier some bruising
Blood CBC near normal.

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Profile picture for siagolfer @siagolfer

I have been on Brukinsa 80X2 per day( half dose due to age 77) and two tabs acyclovir as per advice from m Mayo haematologist
I was on allopurinol for the first three months but stopped once my lymph nodes got significantly less and chance of TLS reduced

So far no major side effects except earlier some bruising
Blood CBC near normal.

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@siagolfer
Six months on treatment

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Profile picture for tezy15plus5 @tezy15plus5

I've been prescribed Brukinsa 80mg (zanubrutinib) 4 capsules daily plus Allopurinol tablets 300mg 1 daily plus Co-Trimoxazole 160mg/800mg 1 tablet twice a day on Mondays and Thursdays only. Does anyone know of the side effects I might have while taking this medication please.

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@tezy15plus5, I moved your question about side effects to this related discussion:
- Treatment for CLL: Any experiences with Brukinsa (zanobrutinib)?https://connect.mayoclinic.org/discussion/cll-zanobrutinib/

How are you doing with Brukinsa? Any side effects? How long have you been taking it?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@tezy15plus5, I moved your question about side effects to this related discussion:
- Treatment for CLL: Any experiences with Brukinsa (zanobrutinib)?https://connect.mayoclinic.org/discussion/cll-zanobrutinib/

How are you doing with Brukinsa? Any side effects? How long have you been taking it?

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I have been on Brukinsa 80 mg twice a day for 6 months as prescribed by Mayo doc
Half dose due to age 77
Stopped allopurinol
Taking acyclovir
No issues
Putting on weight
All numbers improved

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When my husband started taking it, he got horribly sick, but only because he took Brukinsa and his other meds on an empty stomach. Once he made the adjustments he’s been great.

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I am also on The regiment that you described. The only side effect that I’ve noticed is easy, bruising, creating blood spots under the surface of my skin; they don’t last long, however. I’ve been taking Burkinsa for about 6 months. All the best with your treatment.

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Profile picture for siagolfer @siagolfer

I have been on Brukinsa 80 mg twice a day for 6 months as prescribed by Mayo doc
Half dose due to age 77
Stopped allopurinol
Taking acyclovir
No issues
Putting on weight
All numbers improved

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@siagolfer I have been on 160 mg twice daily ZANUBRUTINIB for 8-1/2 years—clinical trial through Mayo. Only minimal side effects, just some bruising. Now age 78, and doing well. Keep it up and get regular check ups!

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Profile picture for minnesotajim @minnesotajim

@siagolfer I have been on 160 mg twice daily ZANUBRUTINIB for 8-1/2 years—clinical trial through Mayo. Only minimal side effects, just some bruising. Now age 78, and doing well. Keep it up and get regular check ups!

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Very inspiring
Thank you so much

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