Acalabrutinib side effects

[19930B]

I am starting Acalabrutinib tomorrow, 100mg twice a day, I am a bit worried, when will the side effects start and finish. This is for anyone who have used it before or currently taking the medication. I have been diagnosed with CLL since August last year. I do feel the fatigue, will it get better after few weeks on this medication. Any tips will be appreciated though I know every body’s body is different. Wishing you all happy new year and may your health improve more this year and onwards.

[sllincolorado]

It was a great med for me. Very few side effects. Some people get headaches for a few weeks- oddly a bit of extra caffeine helps. Drink enough water. Starting a new med is stressful but acala was an easy med for me.

[19930B in reply to sllincolorado]

I have started this evening, has been stressed and anxious. Your reply have given me hope, words are not enough to tell you how grateful I am. Thank you. You are no longer taking it so are you on remission,? was thinking I will take it forever though I know our body is different, please explain a little bit why you are no longer taking it. Thank you once again.

[sllincolorado in reply to 19930B]

After 2 very good years on acala (I was able to work full time and easily do a 5 day hike in Portugal) my numbers started to change. I have relatively challenging markers and it was not a huge surprise that I needed to change treatment. A clinical trial was being offered close by so I started on it.

There are many people on this site that have been on acala for many years. The very good news is there are so many new treatments that for those of us who stop responding there are other very good choices.

[19930B in reply to sllincolorado]

You are such a blessing. It makes sense now. I pray that you will keep doing the things you love and get better. Will update after two weeks😀 about side effects. I appreciate you. ❤️

[country76]

I have had very few problems with Alacabrutinib. At first a slight headache. Not even enough to take a Tylenol. Left as quickly as it came. I had many side effects from Ibrutinib which were completely gone after I started Alacabrutinib. I live a normal life taking this medication.

[19930B in reply to country76]

Very encouraging message, one of the best. Cannot thank you enough. Good luck.

[sundancing]

Hi sllincolorado! Climbing on here to say that I’ve been on Acalabrutinib since November 2017. At first, I was taking 200 mg in the morning, which made me a little dizzy and disoriented. I had unexplained rashes (no itching, just red splotches), which appeared in the morning and went away at night. Coffee did help a bit, yes. Within six months or so, I was put on a regimen with 100 mg in the a.m. and 100 mg at night. That alleviated the impact tremendously. I have had smooth sailing ever since. As far as I know from my docs at the National Institutes of Health, I may well be on this medication for the rest of my life. I am 72. I was diagnosed with CLL when I was 46 years old. I had chemo (6 months of infusions) with Rituximab/Fluodarabine in 2010.I hope it all goes well for you!

All best.

[19930B in reply to sundancing]

Dear Sundancing, I am the new patient on Acala, started just last night and am anxious. Thank you for taking out time to jump in and explain some things I was not sure about.

1. I am on 100 ml twice a day so hopefully it will be swift sailing after my body adjust to it.

2. Now I know I can be on it for the rest of my life, if the side effect is not much I am cool with that, you are so blessed, you are 72 now and have been taking it since you were 46, this gives me hope, it’s just like my blood pressure tablet i have been taking for over 20 years. That’s fine by me.

3 . I survived breast cancer 3 years ago, had chemo, surgery and radiotherapy so I have seen worse. My experience with CLL diagnosis so far is a lot better and more calmer, there is a massive difference.

4. Now I know about coffee and drinking plenty of water would help me.

Thank you once again for sharing, wishing you all the best for the new year, you have given me more confidence. 1993OB

[Mtk1 in reply to 19930B]

Don’t think sundancing has been taken acalabrutinib since they were 46, that’s when they were diagnosed with cll I think.Good luck with your treatment though.

[19930B in reply to Mtk1]

Makes sense though, I agree !! Have a good week. Thank you so much.

[sundancing in reply to Mtk1]

That's right, Mtk1. I've been taking it for a little over 4 years. The last 3.5 years have been a breeze. The first 6 months was mildly disorienting, that's all. It's a lifesaver!

19930B, I'm glad you're in a good place with this treatment. Sail on!

[Mtk1 in reply to sundancing]

Yes I only lasted 10 weeks on it unfortunately, but I’m hopeful of resuming all being well.🤞

[19930B in reply to sundancing]

I really hope to sail on. Please tell me more about fatigue, do you still feel it, it’s my biggest problem since and before I was diagnosed.

[bmredsea]

Good luck. I’ve been taking it for eighteen months now with hardly any side effects, just itchy skin and occasional bruising. It has done the trick for me. After an initial rise in WBCs to 412, I’m now down to 32 and feeling fine. Do drink plenty of water.

[19930B in reply to bmredsea]

Good morning bmredsea, It’s so nice to wake up and read your comment. Woke up to take my first dose😀. I have taken two weeks annual leave. I run a refuge for women and children fleeing domestic violence but it’s time to focus on me. I have my bottle of water near me. Fingers crossed I will sail through.

I am shocked to see your WBC coming down to 32 from 412, I guess you have more energy now. Cos you are feeling. Encouraging words indeed. Thank you so much. Best wishes

[Nicebaps]

I started it in December and within a week or so I had really bad headaches but they are becoming less and less. The only other thing is bruising and lots of it. I'm told that this is unusual and for that reason my dosage has been reduced to just one 100mg capsule a day. This is just a temporary measure until something else can be sorted, if there is anything. You are right, everyone's body is different and so for that reason you may have no side effects. Best of luck.

[19930B in reply to Nicebaps]

Good morning, you started yours in December, wow, I hope something will be sorted out soon. Good luck. Yes, everyone’s body is different from experience when I had Chemo few years ago, at the Chemo ward we usually chat and it was shocking we all had different side effects and we were all taking the same chemo. I hope I can deal with my symptoms I am ready for anything that comes, if nothing comes then that’s jackpot 😀.

Thank you, will check on you to know how you are doing. Good luck once again. We will be fine

[Pageboy]

One year on Acalabrutinib and my bloods are all normal range. Almost immediately - a few days - my lymph nodes began to go down. Took a couple of months for my WBC to start dropping but when they did it was dramatic. A mild headache, some blood blisters under the skin and constipation (unusual) that caused stomach pain were my main issues. Mostly, within a few months it all settled. The odd flair up of minor symptoms still but all in all it’s worked really well with very few side effects. Good luck. You’ll be fine, I’m sure.

[19930B in reply to Pageboy]

Awwww, thank you, hopefully I will be fine. I am a very positive person, reading from those going through it so is more powerful and encouraging than reading about symptoms on medication leaflet. I have an idea what to expect. The fact that the symptoms settle after a while gives hope. I am so grateful for your time. I love these words ……”Good luck, you will be fine I am sure.” Will never forget them. Thank you. Best wishes

[OTBCdave]

I’ve been on Acalabrutnib for around 8 months. I had a few minor side effects to start with, the most notable being bruising and the odd headache. The advice I received (and followed) was to drink lots of water - at least 2 litres a day - and to monitor my blood pressure daily. The side effects wore off after a couple of months and my blood pressure has remained within the normal range. We are all different but my experience of Acalabrutnib has been very positive. Hopefully your experience will be similar.Dave

[bmredsea]

Everyone is so different with CLL. I had it for 7 years before needing treatment. I had no tiredness and only one small lymph node in my cheek. So I haven't felt much different all the way through. I'd recommend plenty of exercise - I do a lot of walking through the fields around our village, and that seems to help. Do report how you get on. Wishing you all the best with acal.

[19930B in reply to bmredsea]

You have been so lucky so far, and I know you will continue to sail through. Thank you about the exercise, I can’t wait to get little energy so I can do things I used to in the past. My fatigue has been so bad, I can’t walk for long but I will start trying to get my fitness back by doing exercise, that’s how to fight and get your life back.

[Bill1288]

I have been on Acalabrutinib for 2 years and 7 months. Before that on Ibrutinib and went through Chemo before that. Was switched to Acalabrutinib because of side effects with Ibrutinib. Have been doing very well. Have occasional joint and muscle pain in legs, but less than before. All blood markers are good. Drinking enough water is key. Hope it works as well for you as it has for me.Bill

[19930B in reply to Bill1288]

Thank you Bill. I hope it works for me as it’s been working for you😍. I will have the occasional joint and muscle pain in mind and find something to relieve the pain. You and I have had Chemo in the past, we have been through a lot but we will keep getting better. Happy to hear ALL blood markers are good, can’t wait for mine to be. WBC was 85 last week but I have 3 lumps in different parts of my body so hopefully it would go down. I am very optimistic, will keep drinking the water😀. Thank you Bill, you just made my day.

[Eucalyptus22]

I don't think you have too much to be anxious about. Acalabrutinib is a great drug and well tolerated. I have been on it for 15 months and my bloods were all back to normal after 4 months. I can't really say side effects have bothered me apart from the odd bruise and damage to my hair!! I know that's trivial in comparison to some treatments but being female it did. (lots or argan hair oil needed). Drink lots of water. I did have a bad reaction to the antibiotic at the beginning, but that was changed and has been ok since.

Good luck with it and let us know how you get on.

[19930B in reply to Eucalyptus22]

With the comments I have been getting my anxiety has gone down. My only question is that now your blood has gone back to normal do you still feel fatigued. ?With the hair, I am female too, my hair has not grown back properly since I had my Chemo, 3 years ago, I have lovely wigs, maybe Acala might finish it off or not😀. I will get the oil to help the hair, not too concerned about it. Thanks for the tip. Will keep you posted. Wishing you all the best too.

[Eucalyptus22 in reply to 19930B]

I don't suffer any fatigue now thankfully. At the start of treatment I did need two blood transfusions and my haemaglobin is now normal. I have noticed that the more I exercise the better I feel. Just a bit difficult getting out walking on my own in this pandemic as husband not so keen on the walking! Used to be a member of a walking group and I so miss that.

[Bartlet in reply to 19930B]

Some people do get fatigue even when in remission but many get a boost of energy. Here is some links on fatigue bloodcanceruncensored.com/?...

bloodcancer.org.uk/support-...

cllsociety.org/2018/09/cll-...

[19930B in reply to Bartlet]

Thank you so much for taking out time to get the links for me. The boost of energy will be wonderful.

[SERVrider]

I started on Acalabrutinib in June 2020. I have had no noticeable side effects other than minor blood-blisters in the mouth which spring up and just a quickly, disappear. I am also taking Co-Trimoxazole as a prophylactic dose. I have one strong espresso each day - perhaps that deals with any incipient headache. Suffice to say, I haven't had headaches. I have joint pain in the left knee but that might just be osteo-arthritis and nothing to do with the acalabrutinib. In my experience, acalabrutinib is nothing short of miraculous. Good luck with it.

[SJH13]

An excellent medication in my case. Had headaches that coffee definitely helped. These dulled and were well controlled by coffee. I got into a routine of drinking 1.5-2 litres per day of water and haven’t really looked back. My lymph nodes started shrinking within 1-2 weeks.

[19930B in reply to SJH13]

I am happy to hear your lymph nodes started shrinking 1-2 weeks. I have one huge under my left armpit, when I had my flu jab and booster, it became huge I could feel it. I have been used to drinking coffee, due high blood pressure , just wondering what other caffeine I can take to help. I really hope it will be excellent medication for me too. Thanks for sharing.