Acalabrutinib and headaches

[tpbholm]

I started taking acalabrutinib in December last year. All went well for the first couple of weeks. However for the last 6 weeks I have been getting severe headaches from very early in the morning - usually around 1am - which can last for more than 6 hours. Pain relief doesn’t do any good at all. Has anyone else had these? How did you deal with them? I’m sitting here in tears at 7.05am having been awake since about 1.30. I’d appreciate any solutions / suggestions.

[DrunkJam_UK Administrator]

Hi,

I am so sorry that you are experiencing this.

First, I am not a doctor, so, I am not suggesting that anything I say is in any way a replacement for speaking to your HCP of choice (and please, maybe a quick phone call in the morning?)

This is basically what I have managed to find out though. Headache is one of the MOST common side effect of acalabrutinib. Definitely talk to your HCP as they are bound to have some ideas - somewhere approaching 50%+ of all patients experience headaches, so, they are sure to know what at least *might* work.

Stress can make headaches a lot worse, so, checking it out with your HCP / CNS (Health Care Professional / Cancer Nurse Specialist) will put your mind at rest too, which may well help.

All the info seems to suggest that headaches will ease off over time, as you adjust to the meds.

One thing I did read though, was some people have found that, bizarrely caffeine seems to help? I don't know how true this is, but maybe a cup of tea / coffee would be at least worth a try?

If you can't get hold of your own HCP, then Leukaemia Care has a nurse you can call tomorrow (if you are in the UK) to talk it through with. 08088 010 444

[tpbholm in reply to DrunkJam_UK]

Thank you for your reply. I really appreciate you taking the time. I had also read that caffeine can help, but unfortunately, due to treatment I am having for prostate cancer, coffee and tea are not allowed. I was just hoping that maybe someone had found another solution. I will talk to my CNS tomorrow, to see if she has any ideas. Thanks again.

[DrunkJam_UK Administrator in reply to tpbholm]

Oh, I am sorry. I really hope your CNS has some better ideas. Do please come back and let us know!

[navarro1950 in reply to DrunkJam_UK]

I was admitted into the clinical trial in October of 2014 before Acalabrutinib had the name. It was called acp196 and I was the ninth person in the country added to the trial. Now I’ve been on acalabrutinib for 8 years and I started having shortness of breath and my heart is pounding like I’ve run a mile full speed but it only happens when I lie down. It’s A-fib . This is the only side affect I’ve had but I’m still alive. I was 52 years old when my journey still and now I’m 72. I’ve learned that God is in control so if or when the CLL should come back I’ll be concerned about it then and I don’t worry about it now .

Enjoy your kitchen. Cook what makes you happy. Think about that and stop with the anxiety. Talk to God and don’t worry.

[kitchengardener2]

Do you also take Allopurinol? I was given that along with Acalabrutinib, Aciclovir and Co Trimoxazole when I started treatment in 2021. The Allopurinol did cause early morning headaches and I was advised to drink strong coffee or tea first thing and take paracetamol. The headaches lasted for three months and then stopped when the Allopurinol was withdrawn (my consultant said we only need it for the first 3 cycles). I have responded well to Acalabrutinib and my bloods are considered within normal ranges. I feel extremely well. Good luck.

Sorry just read that you can't have tea/coffee. Do you have a CNS? Perhaps speak to the nurse service at Leukaemia Care.