Calquence headaches

[PokeyPig]

Hello everyone, just started taking Calquence a little over a week ago and having terrible headaches. My brother suggested drinking coffee which helped tremendously, however drinking coffee at night with my second dose of Calquence causes me to be awake peeing multiple times during the night. Any help would be much appreciated.

[AussieNeil Partner Administrator]

Headaches after starting acalabrutinib/Calquence generally stop after a couple of weeks or so. Meanwhile, as I replied to you earlier, try acetaminophen/Tylenol/paracetamol/Panadol/APAP (same drug, differently known, depending on where you live). You can even buy it combined with caffeine.

Neil

[PokeyPig in reply to AussieNeil]

Thanks so much AussieNeil…just learning how to use this platform so sorry I didn’t respond before now. Also I had no idea about the Tylenol/ caffeine combo. I will definitely check that out…I’m sure it will be helpful.

[AussieNeil Partner Administrator in reply to PokeyPig]

I see that you've worked out to reply to replies to your post, rather than create another post. You'll see all replies to your post as well as any updates to posts you have 'Saved'. You can also alert specific members to a post or reply that you want them to see by using the @<username> technique. How to use both of these is described in reference 3 below.

1) You'll find tips on how to use the site in our Pinned Posts section here:

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2) This post provides some very useful tips

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Neil

[PokeyPig in reply to AussieNeil]

Such helpful information…thanks Neil!

[LeoPa]

I wonder,would caffeine pills instead of coffee work?

[PokeyPig in reply to LeoPa]

I think I might try that. Thanks LeoPa

[LeoPa in reply to PokeyPig]

Let us know if they do help please 🙂

[PokeyPig in reply to LeoPa]

Will do.

[Sierrastar]

I had completely disabling headaches on Calquence which would not respond to any painkillers. Stanford halved the dosage, then quartered it every two days, without success. It was discontinued.I was changed to Brukinsa with no discernible side effects and went into full remission of my CLL after 11 months.

[CaptRon1976 in reply to Sierrastar]

Hello Sierrastar.After clicking your avatar it appears that you started on Ibrutinib, then Acalabrutinib with terrible headaches and then Zanubrutinib which was very successful with little or no side effects. Could you share a little about your genomics?

What deletion might you be? Mutated, unmutated?

I am very near treatment and struggling with decision of which BTKI with concern of chronic arthralgia side effects and cardiac side effects.

Thanks, Ron

[Sierrastar in reply to CaptRon1976]

Hi Ron,I am now 79years old, trisomy 12, unmutated. I started Ibrutinib 3 years ago which was very successful, excellent labs, but eventually caused very deformed nails on my hands and big toes.

My CLL specialist (essential) at Stanford switched me to Alcalabrutinib which was terminated after only 3 weeks. I started Zanubrutinib which was only approved for Mantle Cell at the time, but shortly approved for CLL.

I am now off medication and in full remission after 1 year. I have excellent labs and no co-morbidities.

I wish you the very best of luck, and good health!

Elizabeth.

[CaptRon1976 in reply to Sierrastar]

Thanks Elizabeth!I am 13qUM

Couldn't agree more on CLL specialist.

Had Dr Byrd at OSU who recently went to U Cincinnati.

Congratulations on no meds remission! long May it last.

I may start with ZANU to reduce risk of arthralgias and cardiac side effects.

Ron

[PokeyPig in reply to Sierrastar]

Full remission after 11 months…That’s so encouraging Sierrastar. I’m gonna talk to my doc about Brukinsa

[kitchengardener2]

I had bad morning headaches when I first started with Acalabrutinib (Calaquence). I also had Allopurinol for the first three cycles. I was advised to drink strong tea or coffee first thing and this did help. After the Allopurinol was stopped I was fine. I usually have what I call 'proper ' tea and coffee for my first drinks in the morning but then my usual decaffeinated during the day. I have noticed that, like you I can be up 3/4 times during the night with a really full bladder. I try to drink more water during the day and this helps. I am not a heavy drinker of alcohol but I have found that if I have a couple of glasses of wine, this makes it worse and my urine is really strong. My CNS advised me to drink plenty to flush the nasty cells out. My white cell count is down from 250 in August to 11.7 now. I have no evident lymph nodes.

I have followed you so maybe we can compare notes.

[PokeyPig in reply to kitchengardener2]

Sounds great kitchengardener2…I think drinking more water is definitely gonna help me more.

[nvrbeold62]

I started Acalabrutinib in January and experienced headaches for five weeks. Coffee was the solution for me, as Tylenol didn’t touch the headaches. I resorted to taking a Tylenol w/caffeine pill at about 2 am after being awakened with headaches and it somewhat helped the headache be less severe in the morning. I rated my daily morning headaches in the 5 to 6 with an occasional 7 (on a pain scale of 1 to 10). Bad enough to be quite inconvenient but not migraine-kind of pain.

All in all a relatively small price to pay for this highly effective treatment. When my headaches finally stopped it was pretty sudden.

[PokeyPig in reply to nvrbeold62]

Thanks Nrvbeold62…definitely plan on trying the Tylenol/caffeine if drinking more water doesn’t help.

[louise66]

I started acalabrutinib on 19/02/2022 and I'm still having the headaches.Fortunately not every day now but I do find that paracetamol with added caffeine with a cup of tea or coffee helps. Also if I wake with a headache I have to sit up as lying down makes it much worse. My poor husband gets woken up at 5am some days.

Generally I'm feeling so much better now I'm in treatment, nodes shrunk very quickly and my spleen is starting to shrink too.

I hope yours stop soon - and mine too!

Louise

[PokeyPig in reply to louise66]

Thanks Louise,,,I notice too that when I sit up in bed the headaches subside, Praying they go completely away…will be praying that yours completely stop as well.

[uihwki]

I had similar headaches for the first few weeks. After starting acalabrutinib. My CLL specialist recommended Excedrin Tension Headache (has caffeine but no aspirin). Target has a generic. I would take them in the morning and early afternoon and switch to tylenol late afternoon/evening. Worked for me and didn't affect sleep.

[PokeyPig in reply to uihwki]

Thanks Uihwki…encouraging to know they won’t last forever.

[Swimmizz]

If they continue you might consider seeing a neurologist. I had headaches off and on With two of my drugs. I was not sent to a neurologist until Over one year later. By that time much damage has been done and I now have SSCD. Please take the headaches seriously if they continue. One can always try another drug.

[kitchengardener2]

Are you also taking Allopurinol? When I started last August with Acalabrutinib I was given Allopurinol for three cycles. I was advised to have strong coffee or in my case strong tea first thing in the morning. This worked for me with having painkillers.

[BobCLL]

Just a note, each patient has a different response, started calquence 6 years ago, after two weeks have one very bad headache (flat on my back all day into the night), next day mostly gone, then one cup of Latte and never had another headache, go figure.

[PokeyPig in reply to BobCLL]

Thanks Bob and thanks to everyone…the coffee totally works for me. Headaches are all gone!

[Hidden]

0,1 g coffeine as a pill, shortly taken before sleeping is fantastic help