Starting Acalabrutinib: Due to start... - Positive Wellbein...

Positive Wellbeing During Self-Isolation

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Starting Acalabrutinib


Due to start Acalabrutinib on Friday. Has anyone any advice as to whether to take it with food or away from food? Also, there are other drugs that I'm supposed to take too - Aciclovir, Allopurinol, Co-TrimOxazole. What puzzles me is, if there are any side-effects, how to the docs know which drug is causing them?

19 Replies

Hi I have been on this treatment from October I have had no side effects my noades disappeared in a matter of days now my bloods are all normal .I take my tablets within 30 mins of breakfast then 12 hours later take the rest I set alarm on my phone to remind me hope this helps any other questions please message me good luck it’s a brilliant combo

bmredsea in reply to Yidarmy69

Thank you. Your replies are so encouraging. Long may the treatment work for you.

CADreamer in reply to bmredsea

I started Acalabrutinib 7 days ago. I take with meals usually right after completing breakfast or dinner. Why are the other drugs prescribed? If you prefer, please respond privately.

bmredsea in reply to CADreamer

Thanks for your response. One drug is to protect against viral infections, the 2nd to protect against bacterial infections and the 3rd to prevent damage to kidneys so all sort of necessary I suppose.

CADreamer in reply to bmredsea

Interesting. I must say this is first I have heard of taking drugs to prevent side effects of Acalabrutinib. Not to say it’s inappropriate, just unusual. The Doctor you are seeing is a CLL specialist?

bmredsea in reply to CADreamer

I'm lucky in that I'm being treated by the Royal Marsden - one of the best CLL units in the UK. So feel I'm in safe hands. Hope it's still going OK with you.

Hi, I am pleased to see your treatment is going well, and for others who also responded to you. I start Acalabrutinib next Monday with Allopurinol, so all these comments really help. What time of day do you take allopurinol? I shall follow others regarding timing of taking Acalabrutinib. Take care and keep well

Good to hear from you. I started a week ago now and part from a fuzzy head at times I've been OK. I take Acalabrutinib at 7.30 a.m. and p.m. I was told that I could take the Allopurinol with the acal. but I noticed on the leaflet that came with the drug, it said that it should be taken with food. So I take it with my breakfast about an hour later. Do hope you have an easy start to the regime.

Thanks. I would take my thyroxine (underactive thyroid) around 7am-7.15 then have to wait 45-60 mins before anything else. Hadn’t thought of taking Acal before breakfast but I like hot honey and lemon in the morning. Thanks will work on it. So pleased you are getting along fine, excepting the fuzziness

Hello, just wondering about what advice you have been given regarding shielding/exercising/outdoors etc. I didn’t do much in the first week, mainly because of ‘the head’, but would love to get out of the house/garden. I will speak to nurse also on Monday. Hope you are having a good weekend. Thanks

Hi, I was just told not to go to crowded places. However, all I've done since lockdown is stay at home, walk the dog in the fields (fortunately we live in a village) and go for the occasional drive to some pleasant spot where I can stare at the view. My daughters and partners visit but will only come to the garden where we can sit and chat without getting too close. I don't intend doing much more than that for a while. Much trickier now of course with Covid to consider. Are you taking drugs to combat viral & bacterial infections? I was told I had to take them for a year. Do let me know what advice you are given. Which hospital are you with? Enjoy your weekend too.

Hi, I am with Hammersmith. Been on Watch and Wait for 11 years. Only found my symptoms as they did a random blood test 11 years ago whilst I had another op. No other symptoms, just the WBC climbing recently. They thought I should have had infections, night sweats etc etc. But escaped those. Did get quite tired recently. I am just on Allopurinol with the Acalabrutinub. I think you are doing just as I would if I was further in the country, but might ask the nurse if I can walk round the local streets which are fairly quiet, with a mask in of course. Darent go in a park as they are too crowded. There is an alley at the back of the house, but that gets very boring after 15 mins 😂😂. Will come back to you Monday once I have spoken to the nurse and the results are in. Take care

11 years - you did well. I only managed 6 but again no other symptoms apart from sky high WBCs. Hope the results are good for you on Monday. I have another blood test too and will find out results on Tues or Wed. I'm with the Marsden in Sutton although it's a 60 mile journey there & back to get there. Good luck.

Hi, so I was told my WBC was a bit up (albeit no numbers even when I asked) and that haemoglobin was down a bit but not to worry. I see the consultant in nine days time, so will get everything then. I can now go outside the front door (whoppee) and walk and cycle around local streets, but no such thing as the likes of Kew Gardens, no dentist, no hair cut, and no new hearing test (😂😂😂😂) until WBC come down. But the weather is good and I haven’t been on the bike for ages (don’t get me wrong, I only tootle around!) so that will do me to get my heart and chest moving. Meanwhile cut out some masks yesterday, first attempt, and couldn’t even get the size right, so some young teenager will benefit!! Need to find my brain now. Hope all going well. When are your next tests

Hi, Glad you got some good news re going outside. Had my blood test results this morning. Hamoglobin after taking plunge in the first 2 weeks from 106 to 96, has now stabilised at 97. WBCs again haven't increased too much, 301 when I started Acalabrutinib 4 weeks back, then 361 and now 369. I'm told that my system is now adjusting to the drugs and they don't need me to do another blood test for 4 weeks. Pleased with that. Do let me know how you fare with your consultant's appointment. Good wishes.

Hi, that all sounds very good to me. Well done. Take care

Hi, went to see consultant on Wednesday. WBC down to 160, but don’t want to tell too many people just in case. So I can now come off Allopurinol (of course I shall finish the last five!!). Not to go back for six weeks. Now I need to find out if I should have flu injection before I see him. Last year I waited too long, but got it eventually, still got a weird feeling in my head, but heh ho. Can’t have I all!! Hope you are enjoying the weather today. Take care and keep in touch!

That sounds like all is progressing as it should. Pleased to hear that. My next blog test is on Aug 17th with phone consultation on the 19th. Been on Acalabrutinib for 5 weeks now & so far minimal side effects. Hoping it continues that way. The dog and I are not too keen on the hot weather! though! Good to be in touch and on this journey together.

Loved the sentence about the dog and you. Made me giggle!! Thanks. Had a headache free day yesterday and slept well. I didn’t take the Allopurinol!! All my windows and shutters stay closed on these hot days - thank goodness for north facing windows!!! And I don’t move out of the house! Take care

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