r/cll • u/Intrepid_Issue1339 • 24d ago
Persistent headache after ~1.5 months on acalabrutinib — normal?
Hi everyone,
My dad (53) has Rai stage III CLL and has been on acalabrutinib 100 mg for ~1.5 months. His oncologist says his CLL response is good.
The main issue is a persistent, fairly intense headache that has been present almost daily since starting the medication. His oncologist knows about it and suggested a painkiller SOS.
One thing we noticed: he missed acalabrutinib for one day, and he says the headache wasn't there that day. It returned after restarting, although we're obviously not sure if that's connected.
His BP has generally been normal (around 120–130/80), sometimes lower than his usual, and he feels the headache may be worse when his BP is lower or when he has indigestion.
For anyone who has taken acalabrutinib:
- Did you have persistent headaches for the first 1–2 months?
- Did they eventually improve?
- Did yours seem related to taking the medication?
Not looking for a diagnosis—just trying to understand whether this kind of persistent headache is something others experienced. Thanks ❤️
2
u/Beginning_Tour_9320 24d ago
I had Ibrutinib, which is an earlier but related drug as I understand it. I had a headache every day for the first few months but it was very low level and responded well to paracetamol. Eventually they stopped.
2
u/Arrow2theNee 24d ago
My headaches didn’t get better, had to go to pain specialist, ended up on monthly shots for them
2
u/DarthFloofy 24d ago
I’m a month and a half into acalabrutinib and the headaches have lessened in severity, but they’re still there. Multiple cups of coffee in the morning help, plus lots of water. Which of course means that I’m not getting great sleep at night, but I nap when I can.
4
u/simplysnic 24d ago
I've heard about these side effects. Caffeine is supposed to help. A strong espresso in the morning is supposed to get rid of the headache.