Acalabrutnib: I have read all about people... - CLL Support

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Acalabrutnib

1reb profile image
1reb
6 Replies

I have read all about people talking about side effects ranging from fatigue, headache, diarrhea and other maladies. I just started taking acalabrutnib two days ago and have had almost zero side effects so far. First day had a mild headache and drank a v8 energy drink and it went completely away. I am wondering if perhaps i am one of the lucky ones that have no problem with this medication or does it take awhile for issues to start

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1reb profile image
1reb
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6 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi 1reb,

The list of side effects on any of the BTKi's usually applies to about 20% of CLL patients, and most appear in the early weeks or months and gradually subside. The exception seems to be the blood pressure and heart rhythm issues, which appear in later years for many patients.

The headache symptom on acalabrutinib / Calquence is usually strongest in the first weeks and then subsides over a few months and is often abated by caffeine.

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So you are likely in the 80% "one of the lucky ones"

-

Len

1reb profile image
1reb in reply tolankisterguy

Thanks, so far so good

Nucleusman profile image
Nucleusman

been on it 2/3 years now in remission! wonder drug. But you may get bruising all over your body especially if on blood thinners. stay out of the sun and use factor 50 sun lotion every day as you may be susceptible to skin cancer later

Katie-LMHC-Artist profile image
Katie-LMHC-Artist

I think you’re one of the lucky ones!😂 When I was on Acalabrutinib my headaches started the second night and lasted for 18 months. I switched to Zanibrutinib and I am doing better and have not had a headache. We are all different. Good luck with the medication!

My “toolkit” while on Acalabrutinib:

* Excedrin Dual Action for headaches

* Caffeine/Coffee

* A container to measure my water intake(I fill up in the morning and make sure I drink 72 oz of water during the day)

* Heating pad or cold pack for any muscle cramps

* Iron (prescribed by oncologist for fatigue)

* Sunscreen with zinc

* Awesome sun hat 😂

* Commitment to move around, exercise, walk daily

* Daily reminder to be patient and kind with myself!😊

Bobby9toes profile image
Bobby9toes

I’ve been on Calquence since January. I had headaches at first. Caffeine took them away completely. They went away after a few weeks. I get an occasional red splotch on my face that disappears within a day or two. I know it thins the blood, but haven’t experienced the bruising others have. We are all different. I hope you continue with no side effects. It definitely is a miracle drug. I am now in remission, but still take one pill a day to keep it that way. Remember to drink lots of water. Best of luck to you. Jan

1reb profile image
1reb in reply toBobby9toes

Thanks, good to hear success stories

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