Two Months on Acalabrutinib - Still Underwhelming

[Vizilo]

Just finishing my second month on Acalabrutinib. I’m not complaining and I’m not upset. Just wanted to let people on w&w (I was on w&w for almost 7 years) know what one “path” might look like.

The good news is that my serum LDH is normal for the first time in 5 years and my platelet count (131) is creeping back to normal. My other numbers have hardly moved and so far I have not had that initial burst in WBC to show that acalabrutinib is working. My low neutrophil count (the reason we started treating) has hardly budged and remains stubbornly low at 0.5.

The only side effect has been mild headaches, easily treated with a strong coffee and even this has disappeared in the last month.

I hope that I’m in the minority where results come very slowly and will let you know how I progress.

Hope you all have a lovely spring/fall weekend depending on where you live!!

[Sushibruno]

🙂👍👍

[cajunjeff]

I think your LDH returning to normal and your platelets moving towards normal in just two months are very encouraging results and a great sign acalabrutinib is working for you.

As for your wbc, maybe it was never all that high for you and you dont have a lot of nodular disease. People who see big jumps in their wbc after starting acalabrutinib are typically the ones with large swollen nodes when they start treatment. The jump in wbc is the cll cells being flushed from the nodes into the blood.

It took two years for my wbc to normalize.

[Vizilo in reply to cajunjeff]

You’re absolutely right. My nodes remain normal. My WBC was only 25 at start, 28 after one month and 32 after two months. So, maybe that’s all the movement that I will see. Also, my oncologist does say that typically neutrophil counts are more stubborn and tend to be the last to move with acalabrutinib. Here’s hoping.

Thanks for the encouragement!!

[duncangarnham]

Good news on your blood counts. Stay patient, they will normalise over time.

I'm almost exactly a year into treatment with alcalbrutinib, I did experience a big bump in WBC, but over the course of 4-5months that returned to normal levels.

Just had my most recent check up and my bloods are back to where they were 14 yrs ago. Haemoglobin is back to normal, as is wbc, neutrophils but very slightly low platelets.

I've been placed back in the 'boring' category of patient I.e. nothing going on, all going well. Have to say alcalbrutinib saved my life, if it hadn't been for this treatment I very likely wouldn't be here to talk.about it now.

Keep going, it'll get better soon

[Vizilo in reply to duncangarnham]

Congratulations and Thank you for your kind words of encouragement. Good to know: I was expecting fireworks and only got a fire cracker in the first little while - I have to stay patient. Thank you!!