Withdrawal from Acalabrutinib?

[Jemorgen]

I have SLL diagnosed in 2018. I was on ibrutinib from Sept 2020 until Feb 2024 when my hem/onc changed me to Acalabrutinib as I approached 60. My symptoms have been very stable since 2020 and for the past 10 mons I have been on a half dose of Acalabrutinib.

In March this year I finally received permission from my hem/onc to try discontinuing my acalabrutinib altogether. After recovering (I think) from a mild bout of flu or rsv, I reduced my (half dose) acalabrutinib to every other day for about 10 days then stopped completely. Almost immediately I started to feel like my lungs and body were infected: sore, achy, as if I had a fever but no temperature. I’m not sick. I have had no trouble breathing and my peak flows (a measure of lung capacity and ability to exhale a full breath) were as exceptional as my usual norm (400). Mornings I feel fine but as the day progresses I feel more and more flu-ish without any illness. My energy is fine. I tried using my ventolin which alleviates the feeling in my lungs for a few hours. I’ve been using tylenol for the body aches. I’m wondering if this is a reaction to discontinuing the acalabrutinib? Interestingly, this is similar to how I often felt before I was diagnosed.

I’ve tried to search for similar posts and found some people describing getting infections after discontinuing their BTK inhibitors but I really don’t think I’m sick. Unlike most with CLL/SLL I rarely get sick, although I did get that mild flu/rsv in March.

Any ideas?

[TomS2]

I just finished Calquence 5 weeks ago. I hurt. I feel it in my lungs, back, and legs the most. But with a possible diverticulitis flare up, mild back degeneration, and lets throw in having had a kidney stone 3 weeks ago, I don't know what to think anymore. I'll delete this when you get some useful answers as mine really isn't. Sorry. But I guess I'm just trying to say don't be surprised with having some issues after taking, then stopping, what is a pretty strong, somewhat new(?), drug. So 10 months of Calquence and you are off it completely? I was 2 pills a day for ten months but also taking Gazyva during the first 6 months. My doc says I'm done and I won't be thinking about future treatment for 5 to 6 years. Although when I started the treatment I was going to finish and be done, possibly forever, but maybe looking at more treatment in ten years. I'm 60 yrs old. Thx. Tom.

[Jemorgen in reply to TomS2]

thanks TomS2. That was definitely an affirming response. Maybe a coincidence; maybe not but if two of us had the same experience then maybe? yes, 10 months of calquence but 4 yrs of ibrutinib before that and bendamustine/rituximab x6 in 2019 (which did nothing). I was changed to acalabrutinib because I was turning 60 and I guess the risk of afib goes up in the 60s. I'm hoping I’m done. fingers crossed.

[ncosto]

This is very interesting for me. I have been on ibrutinib for 6 months. I started treatment for CLL only because of penetration of the CLL to my central nervous system and inflammation in the brain. As the symptoms have been quiet and the brain inflammation has not changed, we are experimenting with me off the BTKi to see if there are any changes in the brain (or new neurologic symptoms). Today is day 8 off the drug and I have felt fluish for the past few days.-Achy, tired and not myself. Nothing specific; just feeling lousy (not that I felt great while in treatment, but this is different). I'll be curious to see if you start to feel better the farther you get from the treatment.

[Jemorgen in reply to ncosto]

Thanks so much for your reply. We might actually have a trend! Or at least the start of one. I’m happy to say that today I actually felt better than the previous week - not 100% but didn’t take anything today. Onwards and upwards!

[Andygumps]

I was on 140 mg of ibrutinib since Dec 2020 but haematologist decided to stop the ibrutinib and the co trimoxazole to check if those medicines could be the cause of my blood pressure readings becoming dangerously high-225/90!

I stopped the medicines at the end of Feb and I have been feeling quite rough. My bones ache. I don’t have a high temp but it feels like flu.

I had my bloods checked on Monday and all is well. My haematologist mentioned that sore bones etc can be expected for 3 or 4 weeks after coming off ibrutinib

Btw, I’m no further fwd with lowering my blood pressure! It’s up to my gp now

[Jemorgen in reply to Andygumps]

Yikes! That’s alarming bp. I hope that resolves quickly. Thanks for your reply. I’m pretty sure now that what I have been feeling is related to stopping the acalabrutinib. Fortunately it does seem to be resolving. I really hope your bp does too.

[LeoPa]

How is your CBC now?

[Jemorgen in reply to LeoPa]

We’ll check my bloodwork monthly for a while. That’ll be in a few weeks. I’m a true SLL and my bloodwork never looks very suspicious. If I remember correctly my lymphocytes went up a bit (tiny) when I first started ibrutinib and my neutrophils were slightly elevated once when I’d been on prednisone - I think that was just before I started the ibrutinib. I’ll keep you posted. Thanks

[LeoPa in reply to Jemorgen]

Very interesting. I thought that A would push the lymphocytes out from the nodes into the blood and thus the blood lymphocyte level would rise.

[Jemorgen in reply to LeoPa]

Hmm someone with more knowledge would have to respond to that but that has not been my experience. I’m strictly a node girl lol

[AussieNeil Partner Administrator in reply to Jemorgen]

Jemorgen and LeoPa , only about two thirds of those on ibrutinib saw their lymphocyte count temporarily increase when they commenced treatment. The attached ALC plots from a sample of patients starting acalabrutinib/Calquence also shows temporary lymphocytosis isn't a given.

Temporary lymphocytosis usually occurs too, with other types of B cell receptor signaling inhibitors such as the PI3K 'lisib' inhibitors, idelalisib etc.

Neil

Most, not all who start BTKi treatment see initial increased lymphocytosis

[Jemorgen in reply to AussieNeil]

Thanks as always Neil

[LeoPa in reply to AussieNeil]

Thank you.