Newbie, Acalabrutinib for CLL as initial trea... - CLL Support

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Newbie, Acalabrutinib for CLL as initial treatment

Hippalus99 profile image

I was diagnosed with CLL in 2017 was due to start Chemotherapy this April but this was delayed by covid19, have been offered Acalabrutinib anyone have any experience of this treatment?

14 Replies
Newdawn profile image
NewdawnAdministrator

If you’ve been offered Acalabrutinib as first line treatment in the U.K. in place of FCR, grab it! It’s one of the next generation BTK inhibitors following on from Ibrutinib but with fewer reported bothersome side effects.

It does mean long term meds as opposed to 6 months chemo but it’s a good treatment and well worth considering especially given your age.

Welcome to the site incidentally, I see it’s your first post! 😊

Best wishes,

Newdawn

Acalabrutinib is a 2nd generation BTK drug and growing in popularity

Has your Dr looked at any trials for you?

The ace 311 is a combo of acalabrutnib and Venetoclax and has had great results

Yidarmy69 and AussieNeiil are currently on that trial as well as a few others

All the best

Acalabrutinib has worked great for me!!

Zia2 profile image
Zia2 in reply to country76

Hi. It’s one of my options too. Is it possible for you to offer costs after insurance or Medicare?

If you start Acala be aware a common side effect is headaches for several weeks. I had them for 6 weeks before they disappeared. You can take Advil for them but of course not aspirin or Ibuprofen which are anti-coagulants.

Good luck!

in reply to bhayes84

I'm not sure what you meant, but Advil is Ibuprofen. Advil is just one of the brand names for Ibuprofen.

bhayes84 profile image
bhayes84 in reply to

Thanks for the correction. I meant to say acetaminophen.

Hi welcome to the family, To echo Newdawn go for the Acalabrutinib, This treatment has helped many people with impressive results. Best wishes.

I am on Acalabrutinib as the second line treatment and except headaches at the beginning it is working and no problem for me. It seems to have less side effects than Ibrutinib.

At the present situation with COVID it might be a good choice for you as you don’t have to go to hospital for chemotherapy.

Dana

I agree with every post of people who have used it. It's been successful for me for 2+ years, after failure of Imbruvica side-effects. Re-read Newdawn's initial reply, & good luck!

Gary

Well, I'm three days into treatment with acalabrutinib on the compassionate access scheme; so far no side effects. Too early to say what therapeutic effects are happening. If treatment hadn't been delayed from March by Covid-19, I would have been on Obinutuzumab and Chlorambucil and the side effects of that are reportedly far nastier and much more immediate. It may just be the placebo effect but I feel less tired than I did.

I'm about to start Calquence myself, but for me, if I had a choice between chemo and a new 2nd generation inhibitor, I would go with the 2nd generation btk inhibitor. Calquence is gaining in popularity, though my insurance is dreadfully slow to approve it and I have not gotten the official green light from them yet.

Hippalus99 profile image
Hippalus99 in reply to SethB34

Thanks for your comments, following the positive response I received from everyone I started treatment 2 weeks ago. So far only side effects are mild headaches when I wake up which soon go once i'm up and about.

I hope you get the go ahead from your insurance soon, not a problem for us here in the UK thankfully.

Good to hear you are doing well with minimal side effects.

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