Holding Acalabrutinib for procedures, etc. - CLL Support

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Holding Acalabrutinib for procedures, etc.

Islandjewel23 profile image
5 Replies

Hi all, I read you all here daily and am so impressed and appreciative for all of your collective knowledge!

I’ve been on Acalabrutinib for 3+ mos and doing ok (still with high WBCs and lymphs but they’re starting to come down.) Bruising is worsening recently and so is joint pain! I have arthritis in both hands/thumb joints (as do so many post menopausal women.) I’ve had Cortisone injections in both hands which helped for a while, but those were prior to starting Acala. In the last 2 days I suddenly can’t move my hands without extreme pain- it’s debilitating! I hope to get in to have a couple more injections but am wondering if those would be contraindicated, and also if that is considered a “minor procedure” in that I should “hold my med for 3 days prior and 3 days after”, per the NIH site. It’s hard to find that info. I recently talked to my Onc about holding med if I might need Paxlovid in the future for Covid, and she said “no, you can’t hold your Acalabrutinib!” From my own research I know that that was untrue. Any ideas? Thanks for any help you can give! PS: when searching for info re Acala, often the specialty pharmacist wants me to talk to my onc. I’m wondering where’s the best place to go for more detailed drug info? Thanks!

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AussieNeil profile image
AussieNeilPartnerFounder Admin

While I hope you soon have some replies from other members who have shared your predicament, for the obvious reasons that we are all different, particularly with CLL being such a heterogeneous disease, including our response to therapy, the official site calquence.com/ also recommends you talk to your specialist - as does this site! That said, and keeping in mind that I don't have medical training, the reason for withholding BTKi drugs like Calquence, is that the kinase in platelets is inescapably also targeted, which affects the clotting process, so you are more likely to bleed. We don't need to withhold our BTKi prior to IV cannulas, vaccinations or blood draws, so the risk of uncontrolled bleeding from skin punctures, while not zero, is much less than with surgery.

The site drugs.com is an excellent source of information for drug interactions; just add in the drug you want to check for interactions with Calquence/acalabrutinib here: drugs.com/interaction/list/...

Neil

Islandjewel23 profile image
Islandjewel23

Thanks for your reply, AussieNeil, and for the links.

lankisterguy profile image
lankisterguyVolunteer

Hi Islandjewel23,

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Like AussieNeil I don't have medical training, but we watch the responses here daily. I'm sorry to hear that your joint pain is worse. Unfortunately that is a common side effect from the BTKis, some indications that acalabrutinib / Calquence is better than ibrutinib / Imbruvica but it is unpleasant for some.

See: healthunlocked.com/cllsuppo...

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Len

aquabird profile image
aquabird

My husband has been on acalabrutinib for 2 years. He got covid and had to suspend the pills for 8 days due to paxlovid. Bad thing, his CLL is back with a vengence. Oncologist says that his pills may no longer be working and ordered CT Scans. On the other hand, the dr said it might be covid related. Extremely stressful. He is tired, has brain fog and over all not up to snuff. Wondering now, what there is for the CLL, if this drug does not work. Anyone had acalbrutinib stop working for them? He has already taken vendoclax.

Islandjewel23 profile image
Islandjewel23 in reply to aquabird

Hi aquabird, I am so sorry to hear this about your husband. Luckily I’ve stayed Covid free so haven’t had to face that decision. I’ve read to hold for Paxlovid as if that’s ok, but my oncologist says she doesn’t want me to stop for anything (barring something big, like surgery.) Guess I’ll keep up my meticulous Covid (and all virus) avoidance. Mask mask mask. I’m sorry to hear he might be progressing on Acala. That worries me, as I’ve been on it over 6 months without much response. Early decrease in symptoms like night sweats and fatigue have returned, though nodes have decreased and stayed down. Still waiting for those labs to come down! Crossing fingers for y’all!

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