6 Weeks on Acalabrutinib

[Rrriver]

I have been on acalabrutinib for 6 weeks and I have had min side effects. My white blood cells went from 80 to 380 after 4 weeks. My platelets went from 80 to 100 and my red went from 134 to 124. I have had fatigue and shortness of breath since I started and my question is will the shortness of breath and tiredness go away as I continue with acalabrutinib and my blood counts return to normal. Thanks

[AussieNeil Partner Administrator]

Hi Rrriver,

It's great that you are experiencing minimal side effects.

The increase in your White Blood Cell (WBC) count is of course to be expected. It's due to CLL cells being freed from your nodes and spleen by the acalabrutinib and moving into your blood. A better way to track the improvement in your CLL is to track your absolute lymphocyte count, and rather than your WBC, particularly when your blood counts approach normal.

Your platelets are recovering nicely. Your haemoglobin is still a reasonably level, so that's not why you are feeling fatigue and shortness of breath. I think you'll feel better when your body has dealt with the large tumour burden in your blood. It can take a while for apoptosis to occur and the CLL cells to die. Make sure you keep drinking enough fluids to keep your urine pale in colour, so that you are helping your kidneys support your return to good health.

Neil

[Rrriver in reply to AussieNeil]

Thanks Aussie Neil, It’s nice to have support thru this journey. I might be expecting too much in only 6 weeks. I see my Dr in a few days and hope my blood counts start going in the right direction .

[Nucleusman]

I started on this drug in October 2022. Apart from some bruising and tiredness I have had no side effects.All my levels went up. But on my last visit to my haematologist 2 weeks ago I was told I am in remission. I can’t believe it. Both my red and white blood cell counts are back to normal Have been given 3 months supply of this drug but he doesn’t want to see me til May. So my message is persevere. Although we all respond differently you are doing the right thing

[Rrriver in reply to Nucleusman]

Thanks for your support and glad your in remission

[Muddywater]

Hi Rrriver

I started Acalabrutinib (alongside Allopurinol and Co-Trimoxazole) just 8 days ago and the significantly enlarged nodes in my neck and underarms (where my left underarm had been swollen to the extent that I could cup my hand around it!) have almost disappeared. Like you the only side effect so far has been fatigue and bouts of tiredness and breathlessness. I’m due bloods and consultants visit on 1st March so it will be interesting to see the results. As a type 1 diabetic my blood sugars went through the roof the first few days on Acalabrutinib but I’m glad to say that it seems to have settled down now. Picking up on what AussieNeil said I don’t think I’ve ever drank as much water before! I’m shielding at the moment but determined to get back on the golf as soon as possible.

[Rrriver]

I am glad you are having success with your treatments. All the best to you Muddywater.