Experiences with

Acalabrutinib

I’m on my 3rd month of Acalabrutinib and I must say I’m doing very well. I solved my headaches with iced coffee. Have a few aches in my legs. And a bit of inflammation in my nose. But my white blood cells are coming down and my heamaglobin is rising. So I must say I’m pleased with the result.

Hi I’ve been on Acalabrutinib for over two months now but feeling that my skin is getting a bit itchy like a heat rash. Can anyone suggest what I can put on it.

I’m taking Acalabrutinib with an antibiotic . I can’t understand that if I was to have infusion and a tablet I would only be on it for 7 months. But the same med in tablet form I am in it for life. Confused

I just started my treatment about a week and a half ago. So far doing great. Very minor diarrhea one day and several minor headaches. My question is about drug storage. If you go to calquence dot com it says to store at 66 to 77 degrees f. What do you do if you go on a multiple day trip and everything

He received treatment in the UK STELLAR trial which adds Acalabrutinib to the usual R-CHOP chemotherapy. He's had a spectacular response and his story is here http://digitaleditions.telegraph.co.uk/data/1838/reader/reader.html?social#!

I am on acalabrutinib and being told I should get Paxlovid intravenously to avoid interupting acalabrutinib. Anyone else have experience with this? Seems weird that I have to stop Calquence if I take Paxlovid orally but not intravenously...but what do I know!

Have had a runny nose for months and can only attribute this to either CLL- I am in remission- or continuous taking of Acalabrutinib (Calquence). Anyone have same experience?

Another doctor is advocating for acalabrutinib plus antibody drip (rituximab) 375mg 1 dose every 28 days for 6 months.

Now I’m on Acalabrutinib will I have to stop taking it before the op and then after for a week or so, any experience would be appreciated, thanks Will

I posted recently that I had been diagnosed with gout in big toe and so came off Acalabrutinib for a week whilst I took the medication. Before the gout healed, I started with foot pain, quickly followed by hip pain (RHS).

I started Acalabrutinib in December 2022. After being on the drug I was able to switch to Zanibrutinib. During my time on Acalabrutinib I had daily headaches.

My question is does the cancer cause weight loss or the acalabrutinib. Weight started dropping right after started taking the med.

I started on Acalabrutinib in September last year. At that time my lymphocyte reading was 287 . In December I contracted covid and had to stop the medication for 2 weeks. When I restarted the acalabrutinib in early January my lymphocyte readings were 88.

The oncologist put me on 2 Acalabrutinib and one Allopurinol a day. Long story short, I had a bad reaction to the allopurinol. My doctor put me on only one Acalabrutinib a day then. I’ve done great since. I just had my second PET scan and the results showed that I am in remission!

I’ve been in Acalabrutinib for 3 months now. At first I had a few side affects ie Headaches, Light headed. Feeling a little nauseous . But most of that has passed now. The worst were my headaches. But believe it or not I started taking iced coffee and it cleared it. Better than paracetamol .

Dizziness is listed as a very common side effect of Acal. I have had dizziness since day 1 of Acal treatment more than 5 weeks ago. I find it debilitating. Has anyone else in this friendly community had this problem and is there any chance that it will disappear with time? Thanks.

While we are highly unlikely to see a head to head comparison of acalabrutinib and zanubrutinib, this real world study may provide some guidance to those fortunate enough to be faced with a choice.

Hello, My dad started 100mg/daily of Calquence for manle cell lymphoma on September 9, 2024- a smaller dose because of his age, and high risk status. He has lost a lot of weight and is always tired. Any one else experience extreme fatigue - and any suggestions on how to deal with it, and same with advice

Hi Tedrog, I also started allopurinol when I started my Acalabrutinib one and a half years ago. It took almost a year for my lymphocytes to go down, so I remained on allopurinol the whole time until they were within normal limits.

I finally took the plunge and agreed to start acalabrutinib on October 7th. Comments from many of you were most useful in helping me make this decision, especially about finding oneself at the "sweet spot" to start.