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

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1 week ZANU done!

Nana1961 profile image
5 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!

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Nana1961
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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 to AussieNeil

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 to Katie-LMHC-Artist

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

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