1 week ZANU done!: Hey! Just completed my first... - CLL Support

CLL Support

23,335 members40,040 posts

1 week ZANU done!

Nana1961 profile image
7 Replies

Hey!

Just completed my first week of ZANU. Doing well. Some side effects but very manageable.

Nauseous, diarrhea, dizziness, tingling lips. Zofran is helps with nausea a lot!

WBC up to 229k

Hemoglobin down 10.2

Platelets 178

Kidney function good.

Praying that things keep going well!

Written by
Nana1961 profile image
Nana1961
To view profiles and participate in discussions please or .
Read more about...
7 Replies
Richard_TX profile image
Richard_TX

So good to hear. It's been working great for me for the past year.

AussieNeil profile image
AussieNeilPartnerAdministrator

Side effects other than the risk of developing high blood pressure decrease over time with BTKi drugs, so you appear to be off to a good start, provided you keep on top of the nausea by taking the Zofran before you expect to experience any nausea.

Keep in mind that your WBC is the total of all your different white blood cell types. healthunlocked.com/cllsuppo... It's wise to track changes in your ALC - absolute lymphocyte count (what's happening to your blood CLL tumour burden) and your ANC - absolute neutrophil count (your primary protection against infection). Ignore percentages in your blood test reports unless you need them to calculate your absolute counts (ANC = WBC x percentage of neutrophils, etc.).

About 2 in 3 starting on BTKi drugs see their ALC initially climb, as the CLL is driven out of the nodes, spleen and bone marrow into their blood, where the CLL cells eventually die. See attached results for a few patients on acalabrutinib (Calquence), a very similar BTKi to zanubrutinib (Brukinsa).

Neil

An ALC (and hence WBC) spike is common for a few weeks after starting on a BTKi
Nana1961 profile image
Nana1961 in reply toAussieNeil

Thanks for the info!

Katie-LMHC-Artist profile image
Katie-LMHC-Artist

Good to hear. I am on week 3 of Zanibrutinib. I have only had a little dizziness after taking my morning dose and it goes away quickly. I was on Acalabrutinib for 18 months and had a headache for 18 months! 😩That is why I switched. It feels great not to have a daily headache!!! Good luck with things!👩‍🦳

Nana1961 profile image
Nana1961 in reply toKatie-LMHC-Artist

You too!!! The anti viral makes me feel worse than the ZANU!!

skipro profile image
skipro

I wish you all the best on your treatment.

I have been told by experts that when One takes a BTKi, the lymphocyte counts will go up first before coming down.

My doc told me that it was like a sinking ship all of the rats come out of everywhere. Similarly all of the CLL cell rats come out of the spleen and lymph nodes as they're being killed and thus the numbers go up before they come down

Regardless with this treatment

May God bless you on your journey

Ski pro

Nana1961 profile image
Nana1961 in reply toskipro

He’s correct! Lymphocytes have doubled.

Thanks for sharing.

Not what you're looking for?

You may also like...

Zanu vs Acala, Round 1! (Question)

Hi y'all, Just wondering, seeing as Zanubrutunib is now FDA approved in the USA, if one were to be...
DRM18 profile image

30 days of Zanu

Hey y’all, Just completed first 30 days of Zanu! Feeling good. Lymphnode pain minimal, more...
Nana1961 profile image

Ibrutinib week 1 - gout?

My first week on Ibrutinib has gone fairly well - tummy upset on the 3rd day only when my weight...
Ruhi9 profile image

Ibrutinib Week 1

So I started my 1st dose last Mon evening and have been taking 2 pills every night at 10pm. I make...
Mellyjake profile image

Husband's First week of obinutuzumab done!

Our Doctor and nurses took every precaution to prevent tumor lysis syndrome and it worked. After a...
lisakc1 profile image

Moderation team

See all
CLLerinOz profile image
CLLerinOzAdministrator
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.