Acalabrutinib used by NHS: I'm sure someone has... - CLL Support

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Acalabrutinib used by NHS

Research123 profile image
8 Replies

I'm sure someone has written abt this but just in case:

europeanpharmaceuticalrevie...

I know this has been around for a while in the US but nice to see progress all the time in the UK. I think from what I've read you should be able to take this longer than ibrutinib as it has less side-effects.

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Research123 profile image
Research123
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Jm954 profile image
Jm954Administrator

In case anyone missed it, the information and discussion is here:

healthunlocked.com/cllsuppo...

Research123 profile image
Research123 in reply toJm954

Thank you! Much clearer although it seems not so great as I thought if you're younger as you probably won't get it.....still it's all progress

AnneHill profile image
AnneHill in reply toResearch123

I mentioned this drug to a haematologist and was told that it wouldnt be funded at that hospital. This was a few months ago and I will ask my consultant about it next month. Just out of interest.They intend to give me venetaclax next if ibrutinib stops working. It would be good if I didnt have the joint pain. Anne uk

Catdoe profile image
Catdoe

I have been on Acalabrutinib for a few days now and it is causing me severe migraines & now sickness . I’m told this will pass after a couple of weeks. Time will tell but I think I preferred ibrutinib

sllincolorado profile image
sllincolorado in reply toCatdoe

Many have found that a little bit of extra caffeine helps the acala headaches. If the migraines are waking you up in the middle of the night you might take a few extra sips of caffeine late in the day. Not sure about your sickness - if you are nauseous and you are taking it without food, try taking it with food. If you have been taking it with food and you are not feeling well - try without. Both options are okay with this med. Drink plenty of water. Good luck.

Catdoe profile image
Catdoe in reply tosllincolorado

Thanks for your reply. Are the migraines normally constant? I don’t normally eat in the mornings so maybe I should try food before tablet, although this morning I felt so sick I couldn’t even eat till afternoon. I love my coffee but switched to decaf thinking that would help but maybe I’ll switch back .

sllincolorado profile image
sllincolorado in reply toCatdoe

From what I know, the acala headaches usually last a few days to a few months. Just about everyone says caffeine helps. Even the docs suggest it. I might be able to find some links for you. Until I started these types of meds I did not eat in the morning. I was never much of a breakfast eater. I have completely changed how I eat now. I have caffeine, then I start eating - take the pills - and then eat a bit more.

Catdoe profile image
Catdoe in reply tosllincolorado

Hi again , I tried proper coffee & toast this morning with much better results 🙂. Thank you so much . Have a great day !

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