Hi, I’ve just been told that I will be put on acalabrutinib ....this will be the first treatment i have received as up until now I have been on watch and wait.
If I’m honest I’m quite scarred of this new drug. How have others got on using acalabrutinib as a first line treatment?
Thankyou x
I am on ibrutinib for two and a half years now and doing great. Acalabrutinib I think is proving to be better than ibrutinb. It is just as effective with less side effects.
Its hard to predict what side effect you might get, but for most first time treaters the side effects are mild and diminish as time goes on.
I am, in consultation with my doctor, considering a switch to acalabrutinib. I think its a miracle drug, you get to control your cll with two pills a day. Pretty amazing when you think about it. Good luck.
I had acalabrutinib as a mostly first line treatment. They started me on ibrutinib but I stopped after two months due to side effects. No side effects on acala. Drink a lot of water. If you get headaches (I did not) you might want to increase your caffeine intake.
You might want to read this thread (apologies if I did not properly copy the link)
I was on Ibrutinib but I started getting side effects so my doc switched me to Alcabrutinib. My side effects went away but I got headaches so after a month my doctor switched me to Zanubrutinib. Now I am happy. Blood count is almost back to normal and no side effects.
I’m in a very similar situation. I’ve been on watch and wait for eight years and my doctor just applied to my insurance to have me start on Calquence too. Good luck I hope it goes well for you.
Hi,
I am on Acalabrutinib as part of a 3 drug phase 2 trial. Did awesome on the Acalabrutinib, virtually no side effects except for a little bruising. I found when I did not have enough water, they recommend drinking 3 liters, I had an awful headache. Needless to say, I drank the water. I was originally told that I would be on Ibrutinib, I was concerned about taking it because I have a strong family history of Afib. Best of luck.
Sandy
I am in my third month of Alacabrutinib. I was on Ibrutinib for 14 months however had too many side effects.
I only had a slight headache the first day that was gone quickly and never returned. I drink a lot of water and a large mug of coffee in the AM. I am very happy with alacabrutinib.
I started alcalabrutinib two months ago and so far all OK. No headaches. Took tablets with a full glass of water which means a couple of extra bathroom visits at night but that’s a small price to pay. WBCs are still going up but that’s usual according to the Royal Marsden as the drug clears the lymph nodes and bone marrow before sorting out the blood. All other readings are good. I wish you well when you start.
Hi I’ve been on Acalabrutinib for 10 months brilliant drug noades disappeared in days slight headache but nothing bad now all bloods normal I take venetaclax as well
Hi, I started on Acalabrutinib 2 months ago, like you I was a bit worried but have found it to be quite easy, no serious side effects apart from minor headaches the first few days.
Starting any new treatment is always a bit scary but just taking 2 tablets a day is much easier than chemo and its side effects, Good luck
I have been on Acalabrutinib for almost one year. Headaches for first two weeks (went away with coffee!) and some bruising but overall no side effects and working great. Most numbers in the normal range now! Good luck.
Hello! I ha ve almost finished first 30 days on Acalabrutinib as a first active treatment. Also currently prescribed Allopurinol although that is adjunct to aid kidneys and only for 1st month or in my case hopefully just 2 months. I was very anxious before starting but is a doddle against chemo. Have had a few side effects but nothing unbearable: rashes (look like measles !). Rosy glow - am now looking really well as was very pale before, a couple of days with intermittent headaches - coffee and paracetamol, a few mouth ulcers, increased appetite but no idea if due to allopurinol rather than Calquence. Skin Mark's moreeasily and bruises but all good. First check up after2 weeks a bit of a shock because bloods dramatically raised but this evens out. Had reduced slightly at check up yesterday and apparently fluctuation shows drug is working. My main difficulty is ensuring I drink enough to keep kidneys working well. Good luck .
Are you in States? I am in UK.
I started on acalabrutnib just over a month ago. So far it's been easy. I had a headache in the morning for the first two weeks, but it went away after a cup of coffee. My lymph nodes have returned to normal size, and I feel great. Today is my six year cancerversary, and I'm very grateful for the tremendous advances in recent years with new medicines like acalabrutinib. I wish you the best with your treatment.
Did you consider any trials ? Acalabrutnib is a good drug but it’s a forever pill .
There has been some great trial combinations like A O V and O V , and the ultra v trial
I've been on it for over 2 years. Phenomenol results. Headaches for the first couple of weeks. Caffeine or "Excedrin Tension Headache" helped (it doesnt contain aspirin). Blood levels returned to normal within 8 weeks of starting treatment. I feel Great!
Another thumbs up for me on acalabrutinib (2 months)...slight headache at first, sight petechia, bruising (superficial and they last awhile), and other than that I feel great and my blood work shows improvement all in the right direction.
I want to add that I was VERY stressed out about taking the drug. Once I started taking it and I felt so much better (and looked so much better), I actually look forward to taking it now!
Although it was not my first treatment, I have been on acalabrutinib since January 2018. I was on ibrutinib for 10 days and had to stop it because of bleeding issues. I next spent a year in a clinical trial for TGR1202, but when that stopped working I was switched to acala. During the first week to 10 days I felt somewhat out of sorts...headache, tired, achy. But then one day, I woke up and started feeling like my old self again. As everyone has already told you, make sure you drink lots of water. I am so grateful to be on this medication. My huge nodes are gone and my labs are normal. I have all my energy back and life is good. Wishing you all the best!! Please update us on your response to this awesome medication.
Nan
I was front line treated with Acalabrutinib. I started 3.5 years ago and am doing well. Minor side effects but nothing that would make me stop this incredible drug. Best of luck to you - we are lucky to have this option.
I have been on Acalabrutinib since February 2015. It is a great drug. I have had only positive side effects - no more sinusitis and eczema.
Just want to say a huge thank you to everyone who responded to my request for info.
I feel so reassured and now beginning to appreciate how blessed I am to be offered this treatment . X. Thank you again
I’ve been on Acalabrutinib for about 6 weeks having been on Watch and Wait for about 4 years. I was quite nervous about all the possible side effects but so far I’ve been lucky and have felt ok. My first 4-week blood test after starting treatment showed platelets were ‘holding steady’ and I was assured it takes time to show an improvement. There is some increased bruising but not serious. A great drug for CLL and so much better than having to undergo chemo. And regular coffee certainly helps the occasional headaches.
I had a mild headache for 6 weeks (which is unusually long) but acetaminophen took care of it.
A handful of people have had some bad reactions to Acalabrutnib but overall it is much more tolerable than ibruntnib.
There are also 2 other newer drugs similar with less side effects
Zanubrutnib and loxo.
Zanubrutnib is used more in Europe and Loxo is in trial stage.
Did you look into any Trials
That are available ?
I am due to start acalabrutinib in next couple of weeks. I’m 55 been W andW for 5 years. I work part time 3 days a week, which I’m hoping to maintain. Anyone else taking the drug working?
Thanks
I worked full time (from home, desk job) while I was on acala. No issues. Felt great. Was able to exercise without issue. Some people get headaches for the first few weeks and say that a little extra caffeine helps. Also stay well hydrated.
Acalabrutinib and water
sun sensitivity and acalabrutinib 
Acalabrutinib headaches
