Calquence and headaches: Hi All - I just started... - CLL Support

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Calquence and headaches

Brucex100 profile image
11 Replies

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

11 Replies
nvrbeold62 profile image
nvrbeold62

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.

Panz profile image
Panz in reply to nvrbeold62

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 🙏💕🙂☘️ 🐰🐣🐥💐

Vizilo profile image
Vizilo

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!!

Eucalyptus22 profile image
Eucalyptus22

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

lotn9 profile image
lotn9 in reply to Eucalyptus22

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.

bhayes84 profile image
bhayes84

It took 6 weeks before my headaches went away.

LeoPa profile image
LeoPa

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.

nvrbeold62 profile image
nvrbeold62 in reply to LeoPa

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.

LeoPa profile image
LeoPa in reply to nvrbeold62

You get used to caffeine if you're like me.I can drink a cup, go to bed and sleep like I had none.😃

kitchengardener2 profile image
kitchengardener2

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.

Brucex100 profile image
Brucex100

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

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