Started 2nd line Acalabrutinib , Top tips 😆

[Roseneath69]

Hi all,

I have just started my second line treatment last week for my CLL. Diagnosed in 2017 , chemo previously FCR in 2020. Bloods needed zapping so my haematologist/ oncologist has started me on this drug.

I live a very active and try not to let CLL define me but as you all know on our journey we have to stop to take the next step to recovery.

I was wondering if anyone had any advice for side affects and what foods to avoid. I work full time but haven’t made it in today as previously warned this drug would give me up to 3 weeks sickness, headaches and a loose tummy which it has.

I’m also getting aching joints and racing heart at points , lethargic. I do have a cancer nurse at Christie’s who I can contact should I need too. I’ve been told no Seville oranges or grapefruit. I can take paracetamol. Apparently this is a life long pill so long as you can tolerate it and the drug continues to work.

Many thanks in advance, please only positives at this stage obviously on the food and drink I need to know what not to take.

Lou 😎

[GMa27]

I did FCR in 2018 & so far still in remission. What are ur markers? I am 13q mutated.Acupuncture helped me with the few side effects I had from FCR.

Claritin without D is great for most with pain.

Wishing you an uneventful journey. Not everyone get those side effects. Good to be prepared as you are doing.

[Roseneath69 in reply to GMa27]

Hi

I did FCR in 2020 it gave me neutropenia sepsis after 5 cycles which levelled my bloods for 5 years.

I am now moving onto Acalabrutinib my questions are based on.

Many thanks

Lou

[Westie11-]

Hi have you been prescribed an anti sickness pill? If not, I suggest you get in touch with your hospital and ask for it. The sickness should only last a week or so. As others have said drink coffee if you get headaches, it does help. Also you may notice you bruise very easy but will go but just takes longer.

[Roseneath69 in reply to Westie11-]

Thankyou! I will do this Xx

[Westie11- in reply to Roseneath69]

Also just remembered this. As the sickness was when taking the morning pill a tip I got on this site I have used ever since. I take it half way through my breakfast. So food before and some more after taking it. Hope that helps too. I have also an alarm on my phone to remind it's time to take the evening one as it's so easy to forget.

[Roseneath69 in reply to Westie11-]

Thankyou x

[Roseneath69 in reply to Roseneath69]

I got the anti sickness pills yesterday after you said from Christie’s Thankyou x

[Sharastani]

FCR in 2010.

Went on Acalabrutnib in August 2022, so two and half years in and so far so good.

A couple of headaches in first couple of weeks which were resolved with paracetamol.

No issues with tolerance, so plenty for you to be positive about.

I am TP53 so not sure if that impacts the longevity of Acalabrutnib, but reading other posts it will impact my next steps.

[Roseneath69 in reply to Sharastani]

That’s a real positive many thanks for your response X

[Bobby9toes]

I have been on Calquence for a little more than a year and only had headaches in the beginning that coffee resolved. I was told to have Imodium on hand, but never needed it. I was also told no grapefruit. I bruise easier and get an occasional red splotch on my face that is gone by the end of the day. Other than that, no other symptoms and doing well on it. Best of luck, I’m sure you will be fine.

[Roseneath69 in reply to Bobby9toes]

Thankyou x