First month on Acalabrutinib and numbers are underwhelming.

[Vizilo]

I just had my first month on Acalabrutinib and my first visit/blood work with oncologist. While the side effects so far have been minimal (headaches easily treatable with coffee), my numbers have not significantly budged.

Am I expecting too much? Does it take several months or more to see if Acalabrutinib actually works?

[lankisterguy Volunteer]

Hi Vizilo,-

It's a coincidence that two postings are within 2 hours of each other. See this one: healthunlocked.com/cllsuppo...

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For some CLL patients starting any of the BTK inhibitors ( Ibrutinib / Imbruvica, Calquence / Acalabrutinib, etc.) causes a sudden rise in ALC, and then there is a long slow "glide slope" down over the next 6 -12 months to a normal ALC reading.

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So if your numbers did not go up, then you may see that gradual ALC decline start the next time your blood is tested.

Improvements in the Red Blood numbers (Hemaglobin, Hematacrit and platelets) may start showing in the next few tests .

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Len

[Vizilo in reply to lankisterguy]

Hi Len,

Yes, I noticed that other post and others like it and I said to myself that’s certainly not my case.

Thank you for your comments: they are reassuring. I should also mention that most of my numbers stayed the same or become a little worse except for one which escaped my attention before: my LDH-Serum dropped almost half from 371 U/L to 198 U/L in one month. First time that number has been in the normal range in 5+years. So, maybe credit should go to Acalabrutinib.

So, thank you again for, at least temporarily, lessening my worries. I am the biggest proponent of the view that CLL has as many permutations and combinations as there are patients. But, sometimes I forget it in my own case

[AussieNeil Partner Administrator in reply to Vizilo]

LDH is indeed used to provide an indication of the CLL tumour growth. So that first ever record drop is indeed a strong indication that Acalabrutinib is inhibiting your CLL. About a third of patients don't see a temporary increase in their ALC when starting a BTK inhibitor.

Neil

[Vizilo in reply to AussieNeil]

Thank you so much for your kind and thoughtful response.

[bkoffman CLL CURE Hero]

To be expected and of no concern especially if feeling well and nodes are shrinking.

[Vizilo in reply to bkoffman]

You are right...I worry too much. I am feeling well and my nodes don’t need shrinking (normal size all these years). And I should remember that my first (very insensitive) haematologist gave me 1-2 years to live, 7 years ago. My current oncologist (specializing in CLL) is kind, thorough and thoughtful.

[Pageboy]

Don’t worry. I am just starting my fifth month on Acalabrutinib. The first month my WBC went over 200 as my lymph nodes went down, then months two and three there were small declines. This week, after four months, there has been a significant drop from 121 to 67 and that’s expected to continue. So, yes, it takes time. I find it helps manage expectations to remember that it took me over 8 years on W&W to reach the point of treatment. It’ll therefore take time to ‘reverse’ it.

[Vizilo in reply to Pageboy]

You make an excellent point. I was also on watch and worry for almost 7 years. So, why am I expecting instant results. Thank you.