Hi everyone, today I have started my Chronic lymphocytic leukaemia (CLL) treatment with the drug Acalabrutinib,
I will give regular feedback on my progress, side effects etc, if any.
This may be helpful to anyone else who is prescribed the same drug in the future,
My Consultant tells me that it has been very effective with his other patients prescribed it.
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Hi @Briank, thanks this is another great value of this forum as many of us with CLL will be so interested in your experiences.
We are all here to support you and the support line details are above if you would like to talk to someone.
Thanks again for your post.
Have you had any side effects so far?
I have only started my treatment today, so nothing to report yet.
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It’s so useful for others to share experiences. I look forward to hearing about how you get on.
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Hi
I was expecting to start treatment with Acalabrutinib in Jan this year but my platelet count recovered a little, but still expecting to start some time soon - next consultation in 2 weeks .
your feedback of experience will be most welcome
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Let us know how you get on. It’s fascinating that so many new treatments spring up in the world of blood cancer and give us all hope for the future.
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Hi @ben70 I am so glad you have found us and posted, I am probably not going to give you the experience angle you were hoping for, but I have found writing down all my questions, fears, thoughts, feelings practicalities, symptoms and medical history history and medications really helps me so I get the most out of my appointments and I now ask those follow up questions and ensure I understand the responses too.
We support each other on this forum no matter what blood cancer we have and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Please do let us know how you get on at your appointment in two weeks.
Hi @ben70 and welcome to the group. Hopefully someone will be able to share their experiences with you. How are you feeling about your up and coming consultation? Is that when you’re find out more about you’re treatment plan?
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Week one on Acalabrutinib treatment, feeling good, no side effects to speak about, I have to take three other tablets as well, too control infection etc, I assume that this is standard for anyone starting this treatment.
Two of the possible side effects of this treatment is heart flutters and bleeding, I myself have AF Atrial Fibrilation ( irregular heartbeat ) I also take a blood thinner, Rivaroxoban, I have ha no problem with these side effects.
My lymph nodes are already reducing.
Fingers crossed it carries on like this, and at the moment i am very happy.
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Thanks @Briank for your update, good news for you and I am glad that you are happy.
I am also on medication for an irregular heartbeat.
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Sounds like it’s going in the right direction. Keep us updated and take care 
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Hi everyone, completed one month on my Acalabrutinib treatment, the symptoms I’ve had so far bruising, mainly on my legs which are now starting to fade and no new one’s appearing, my consultant says it because I’m taking a blood thinner and Acalabrutinib has a slight anticoagulant effect itself, I’ve had muscle pain, which once again started in my lower legs which has now gone, at the moment i have muscle pain in my thighs which once again is easing, I get very breathless which may be linked to the fact that on my last blood test I was found to be enaemic, my consultant is investigating the cause of this, it appears that the medication takes a while to really get into your system, and as time goes on the side effects ease.
All in all i am feeling very well with an increased appetite, I have no regrets about having the treatment and happy to continue.
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Hi @Briank thanks so much for your update, I am so glad that after one month on Acalabrutinib treatment that you feel that you have no regrets about starting this treatment. It is also so useful for us all to hear about the symptoms you have had.
As I read your post I was really impressed that your consultant has been so helpful.
Take care and keep posting how you are.
Has anyone else had similar symptoms?
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Morning @Briank. It’s good to hear you have no regrets and that things are going well. Easter is a great time to have an increased appetite. As @Erica said it so important to have a good team around you. Keep us updated
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Hi @Briank I’m really glad that things are progressing for you and I hope everything continues to go well. Great that you’re so positive.
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Hi everyone, month two completed with my Acalabrutinib treatment, the muscle and joint pains have all but disappeared, the random bruising has gone, the only bruising I get now are self inflicted.
I still get very breathless when walking, this is most likely due the my anaemia which we haven’t got to the bottom of yet, I still have a big appetite ( I could eat for England )
It appears that your body has to aclimatise to the drug initially, I hope this is some comfort to anyone else who is prescribed the drug.
My Consultant is now happy to put me back on telephone consultations, i am pleased with how the treatment is progressing.
I will continue to update on my progress.
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Hi @Briank great to hear from you with your update, it sounds as if you are more comfortable now, apart from the breathlessness, and that your consultant is pleased with the way things are progressing.
Have you had any Covid vaccinations and how do you feel about the easing of Covid restrictions?
Hi Erica, I’ve had both of my covid jabs and had no problem with either, I’m ok with restrictions being lifted because I will still continue with safety precautions, i won’t get into any situations i am uncomfortable with.
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Hi @Briank, it sounds sensible and good to me.
It’s all about doing what you feel comfortable with isn’t it
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