Acalabrutinib

I have found a few posts in this forum from others taking acalabrutinib that I have found useful, but thought it worth posting something in a thread specifically labelled acalabrutinib in the hopes that I can share notes with others on this drug on our experience.

I have Chronic lymphocytic leukaemia (CLL) and was put on acalbrutinib last February after getting quite severe anemia. (I had previously had a couple of half-doses of the FCR chemo, but it was decided that side effects were too great for it to be safe for me to proceed.) Since then the main indicators of Chronic lymphocytic leukaemia (CLL) progression (lymphocytes … ) have come right down and my haemoglobin has largely recovered - hooray.

The main down-side for me is the immune-suppression that this drug adds to that from the Chronic lymphocytic leukaemia (CLL) itself, scary in particular with Covid around. I have posted elsewhere in this forum my frustration that the drug evusheld is not available here, which would enable me to isolate at least somewhat less than I feel I have to now.

I have been aware of one side effect – diarrhoea. Up to now I have been able to control it reasonably with diet change and loperamide, but have had to up my dose over time so now taking 2-3 tablets per day, with the notes in the packet telling me that the maximum is 6 and not to take it over long periods.

I have not thankfully had heart rhythm problems (so far!), which has been I understand been a concern for two others posting on the forum. Nor have I to my knowledge had more infections, bruising, or bleeding, listed as common on the documentation and helpful Macmillan page pointed out by TanyaBloodCancerUK in another post.

I would be very interested to hear the experience of any others taking this drug.

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Thanks @Ben that is a really good idea to so clearly headline your post.
I really do hope others see it and join your thread.
Look after yourself