Hi All - I just started Calquence - day 5 - and I am waking up with solid headaches - I read that this should ease after 14 days - what have others experienced
Also interested to know if anyone has been on Clorambycil for long periods - I was on that for 12 months but my Dr was not keen for me to be on it long term
thanks to everyone who has posted - this forum has been GOLD
cheers
Bruce - 61 male from Australia
Hi Bruce, sorry to hear you are having these headaches. I started Calquence in mid January and as predicted, had some pretty strong headaches each morning. The cure for me was a cup of coffee. 100% of the time it worked. Extra strength Tylenol did nothing for it.
I unfortunately had these for about 5 weeks. But I love my morning coffee- so I had that going for me. 
When they stopped it took about a week or so of a couple mornings without and a couple of mornings with. Then boom. Done.
Hang in there! This too shall pass.
You are spot on with what you told Bruce and it is so nice to know you have both feet back on your journey! HAPPY EASTER!!! I am doing just super great!!!
Panz 🙏💕🙂☘️ 🐰🐣🐥💐
Agree with others. Started Calquence early last year. Morning headaches lasted 2-3 weeks. Tylenol was no help but a couple of cups of strong coffee in the morning did the trick. Instant coffee worked best for me (more caffeine!). Headaches no longer an issue.
Good luck!!
Coffee certainly seems to be the solution often mentioned on this site. I was fortunate and didn't have any headaches and have been on Acalabrutinib since October 20. Now I treat myself to a steaming mug of the best quality coffee I can buy '"just in case I get a headache"
😆
The only complaint I have about this wonder drug is that it has turned my hair to straw and desiccated my skin.
Good luck with it.
Kate
Hi all who are on Calquence, I started about September last year, after spending a month in hospital being tried for Venetoclax, had an adverse effect. At the beginning of Calquence I too had headaches, but as mentioned on here, a cup of coffee with the tablet in the morning helps, but my skin not good, I have little bruises on the palms of my hands which do not go away. Also tired, but then all this is the norm with CLL. hang in there, if the wonder drug helps to keep us going, what's a cup of more of coffee or whatever else floats your boat between friends.
It took 6 weeks before my headaches went away.
Did anybody try to make strong coffee and keep it by the bedside during the night? If you wake up drink a few gulps. Maybe there would be no more morning headache in that case? I drink quite a lot of coffee and sleep like a baby still. Except sometimes I wake up a few times during the night but that's not coffee related.
I kept a couple of Excedrin with caffeine handy for the 2:30 AM headaches that struck me several times. I popped a couple of those and was able to manage to get back to sleep out of being so tired in spite of the headache. Then I would awaken around 4 am with no hope of going back to sleep due to the caffeine from the Excedrin but at least the headache was gone.
If I kept at least sipping coffee throughout the day my headaches would stay away. But I don’t really like to drink coffee past four or 5 PM so by nine or 10 PM I would begin to get a headache. Not bad enough that I couldn’t sleep but sometimes that 2:30 AM headache was pretty rough. I described my typical morning headache as about a five or six on the pain scale to 10, meaning really annoying and uncomfortable but certainly nothing at the migraine level.
You get used to caffeine if you're like me.I can drink a cup, go to bed and sleep like I had none.😃
I have been on Acalabrutinib, Aciclovir and Co Trimoxazole since August 2021. I had Allopurinol for the first three cycles and had what I called tired headaches in the morning. After reading that caffeine helped, I changed from decaffeinated tea to proper tea and had an occasional cup of strong coffee. No headaches now. Blood good WBC down from 250 to 17 and Heamaglobin in normal range. Fingers crossed it continues, next bloods in early May.
Thanks for the replies everyone - the coffee is certainly working - and last night I had a coffee about 2 hours before bed and this morning the headache was only slight - hot shower on the back of the neck also gives relief thanks
I just read your post from a few years ago. Are you still getting headaches? I’ve been on Acalabrutinib since December of 2022. I had terrible headaches that would last all night. Through this post I starting taking Excedrin Tension Headache that has 65 mg of caffeine. It did the trick. Then my oncologist stated that if I go off the Excedrin I could get rebound headaches. I weaned myself off. It’s been 13 months now on Acalabrutinib and I was still waking up around 3:30-4:00 with a morning headache. I just get up and have my coffee and the headache goes away. For a while I was taking magnesium glycinate before bed and it help a little. I just started to take an increase in magnesium at night, 200 mg and I think I finally have the headaches under control. You are probably doing fine now but I’m sending g this to you just in case. Stay well!🦋
hi Katie yes I’m going well
I have a small coffee 2 hours before bed and I don’t get any headaches
Acal is working well
Good luck
Bruce
Increased Hair loss upon starting Calquence and Gazyva Infusions
Calquence
Beginning Calquence
Headaches and CLL
