Brukinsa/Zanubrutinib slow working at present time

[Bethsaida]

I started treatment in early May with Zanubrutinib but because of severe stomach pain with it and acyclovir stopped it after 6 weeks so that an endoscopy could be done. Wbc started at 212,000 and went up to 300,000 in 2 1/2 weeks. 2 weeks later down to 165,000. The time off was almost 3 weeks. Started back 2 months ago along with Nexium 2/d. Last month after being back on Zanubrutinib for a month wbc went up to 175,000 which seemed logical since I had been off for a while but after another month of treatment I went in yesterday and wbc had increased again to 185,000 with 98% lymphocytes. I was depressed as it was felt counts would be coming down. I will be rechecked in 6 weeks. I know this is a new drug to cll and I still have confidence it will work. Anyone else had experience similar with pausing early in treatments?

[lankisterguy Volunteer]

Hi Bethsaida,

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I see you were diagnosed CLL in 1998 with a short course of chlorambucil in 1999 and your first targeted treatment started 4 months ago, so your CLL progresses very slowly.

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The recent pause to deal with your stomach complications may have caused what is termed "tumor flare" and the erratic wbc you have seen may be the result of your lymph nodes and peripheral blood reactions to all your medications and your immune system disruptions. (The cytokine signaling from injuries like your gastro issues can cause strange test results).

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With CLL we see our blood values bounce around often, and our medical teams will look at multiple results over several months before acting on trends in test results.

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I hope things settle down for you in the near future, and that you ALC / Lymph# begin the long steady downward trend that is expected.

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Len

[Bethsaida in reply to lankisterguy]

Thank you for your response.