stopping Acalabrutinib

[1234-1234-1234]

I have had to stop treatment twice now for 4-5 days. No problems at all and didn’t affect blood results

[AussieNeil Partner Administrator]

I think you meant to reassure OaktownN in a reply to their recent post here healthunlocked.com/cllsuppo...

Thanks for sharing your experience,

Neil

[1234-1234-1234 in reply to AussieNeil]

I’m new to this Neil today, never shared my CLL with others but find it a welcoming website, lovely in a way to share problems and gain info. From England to US thanks !

[AussieNeil Partner Administrator in reply to 1234-1234-1234]

Sorry, I didn't notice that you'd just joined. Welcome to our community!

Thanks for providing an overview of your CLL journey in your bio. You are correct that NSAIDs such as ibruprofen are discouraged when you have CLL, particularly when you are in treatment. That's because they can suppress bone marrow production, potentially increasing your risk of bleeding from low platelets, infection from low neutrophils or more severe anaemia. You might like to separately post, asking how others have managed inflammatory pain without NSAIDs. When your blood counts improve sufficiently to get back into the healthy range, you might like to ask your consultant if they approve of you again trying ibruprofen, but do keep in mind that all BTKi drugs - the 'brutinibs', have off target effects on the kinase in platelets, with the result that even with good platelet counts, clotting effectiveness is reduced. That's why bruising and petechiae (pinhead sized red dots under the skin) are more common during treatment.

I note that your peak WBC count of 700 is among the highest I've seen mentioned in our community, but it's a long way shy of the highest count I've heard Dr Thomas Kipps a UCSD California CLL specialist note, which was 1,400! CLL cells are small, only slightly larger than red blood cells, so circulatory complications from lots of excess lymphocytes in CLL is very rare.

We have plenty of shared information on very important topics in our Pinned Posts section here: healthunlocked.com/cllsuppo...

This post explains how to navigate this site: healthunlocked.com/cllsuppo...

Neil

[1234-1234-1234 in reply to AussieNeil]

Thank you so much, I’m looking forward to understanding this whole new communication process, it’s very interesting!

[Walkingtall62 in reply to AussieNeil]

Thanks, I either didn’t know or forgot about ibuprofen and the brutinibs. Take care

[sdowney8600 in reply to AussieNeil]

Thank you for this info. I’m new to posting but not new to the group. I joined a few years ago for my brother but now have my own CLL/SLL to keep up with. I’m still on W&W but have had several “we might need to start treatment” drills. But I was unaware of the contraindications with NSAIDs and CLL, especially while on BTKi treatment.

Weirdly enough, I have elevated platelets just as one of my other weird issues that they’ve been unable to pinpoint. I’ve had them for years and my niece and daughter also have elevated platelets. Mine have never gone higher than 600 and I’ve been seen by hematologists to check throughout the years but no diagnosis from it.

But I do take tons of NSAIDs for my autoimmune arthritis which I cannot treat with 99% of the drugs they use to treat autoimmune diseases because my CHEK2 mutation is ready to give me multiple primary cancers as soon as my immune system is suppressed any more than it already is.

But I’ve noticed a lot more of the petechiae on my hands and arms than my norm. I usually have pinpoint petechiae that I’ve also had for years but these are different. I also rarely used to bruise or even get big blood bruising from IVs but I’m getting all of that now, even though my platelets are still elevated or high normal. Any ideas as to why that may be happening already with a stable normal platelet count? My WBC is around 60k.

Sorry that was a long question! Any ideas would be appreciated! Thank you!

[AussieNeil Partner Administrator in reply to sdowney8600]

You've highlighted a possible genetic factor. Perhaps in addition to your higher platelet count, they don't clot that well?

[sdowney8600 in reply to AussieNeil]

Sadly it’s a new problem. I rarely ever bruised before I had CLL/SLL. I will run it by my oncologist—I just had no idea about the NSAIDs, which I rely on more than I’d like to need to. The only thing that’s out of the norm for me at this point is my white blood cell count and my lymphocytes. Thank you for your ideas though. Much appreciated!

[Katie-LMHC-Artist]

I believe I will have to stop my Acalabrutinib for a few days due to having some surgery because of skin cancer. Did you have any side effects when you stopped for that brief time? Thanks!