Could anyone, please share any information regarding usage of acalabrutinib? My husband has Chronic lymphocytic leukaemia (CLL) , diagnosed 10 years ago. Initial treatment was FCR with 9 1/2 years remission. Recently had bloods done following review and he was told his Chronic lymphocytic leukaemia (CLL) had mutated with TP53 gene, starting acalabrutinib on Tuesday.
Lots of positive reviews of the drug online and after talking to specialist Nurse, this advice also relayed. Just wanted to ask on does anybody still enjoy a drink while on treatment? And if so how as taking twice daily? Obviously the point being you should be able to still enjoy your life.
A great big welcome to our forum @sbk
You say you have spoken to your husbands specialist nurse who is a really good key contact for you both.
As to drinking this really is a question for your specialist nurse as they know your husbands whole medical history and the proposed treatment regime.
This is not a medical response, but just my personal experience, that I choose not to drink, although I am not on treatment and I enjoy life.
The Blood Cancer UK support line is there for you on 0808 2080 888.
I await others experiences.
Please do keep posting as I look forward to hearing more about you both.
The main thing is that you both look after and be very kind to yourselves
Hi sbk,
I cannot be specific to Chronic lymphocytic leukaemia (CLL), mine’s Waldenstroms and I’m on 420mg/day Ibrutinib as a Kinase blocker.
There has been no clinical direction to cease alcohol with the obvious sensible in moderation message.
I enjoy a Guinness (or 2) and the occasional dram without any identified adverse health effects, both personally and clinically.
From the off before proceeding with the Clinical Trial (Rituximab & Ibrutinib) my Consultant and CSN’s determined my lifestyle of diet, exercise etc. and have always supported my lead on Quality of Life.
I don’t want to be a humourless, bitter (no pun intended) Troglodyte. Now where did I leave the bottle opener?
Hope ‘yer man’ gets on with his potions and both of you can live as full a life as possible.
Dear @sbk
Thank you for your post and welcome to the forum. It is great you have found us and I hope you and your husband find this a supportive and informative space.
I am really glad to hear that you have spoken to the nurse specialist about the treatment and it’s effectiveness. May I ask whether you have been given any written information around Acalabrutinib? If not here are some for your information: Acalabrutinib (Calquence®) | Macmillan Cancer Support Acalabrutinib | Cancer information | Cancer Research UK
I would suggest that in terms of alcohol intake, I would refer back to the Clinical Nurse Specialist who will have a detailed understanding of your husband’s condition to make that judgement. Most often there is a guideline of moderation with alcohol and to ensure that hydration is maintained generally.
Do get in touch if you have any other questions or need to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
My husband has now been on acalabrutinib for over one week. Has to have bloods checked in one week to see if blood/platelet transfusion may be required.
Apart from this everything so far is going well. He is very tired, quite pale looking. Apparently this is quite normal.
Thanks @sbk for the update on your husband.
I find it so difficult to watch a loved one and there is nothing you can do to make them better
How are you doing?
I hope that you are looking after yourself as well as you do your husband.
Haven’t been great in previous two weeks. Quite frightened of the unknown.
But feeling much more positive now. Have been off with husband for couple of weeks so , will feel more comfortable when returning to work if I know he’s well.
Oh @sbk I think it is so natural to be frightened of the unknown and if I get run down the fear gets worse.
I bet you really needed that 2 weeks off to recharge your batteries.
Be kind to yourself and also look after yourselves,