Am newly diagnosed with Chronic lymphocytic leukaemia (CLL) and about to start treatment with Calquence have some anxiety about this drug any advice would be welcome
Hi @Ellen49 it sounds as if everything has moved rather quickly for you, but I am so glad that you have joined us on our forum family, you are never alone on here
i have had Chronic lymphocytic leukaemia (CLL) for 19 yrs but I have been lucky enough to always been on what is called watch and wait or active monitoring.
Are you just concerned about Calquence or would you be anxious about any drug, I would be?
Perhaps you might write down all your anxieties, questions and practicalities for your specialist nurse, GP or consultant and that might give you some guidance.
I hope others will be able to share their experiences with you.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888 and I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Please do let us know how you get on and I look forward to hearing more about you.
Be ever so kind to yourself I was in shock for a long time after I was diagnosed.
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Hi @Ellen49 and a big welcome to the forum.
It must be a really difficult time. Recently diagnosed and treatment starting. You are suddenly thrown in to a whole new world.
@Erica has given some great advice. I always find it helpful writing my thoughts and questions down. Others on the forum may be able to offer their experiencesn if they have had the same treatment.
When do you start your treatment?
Please take good care of yourself X
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Hi @Ellen49,
I hope you are doing okay today? I’m pleased you have opened up this conversation and I hope you are able to meet others who have experience with Calquence ( Acalabrutinib) also.
It is really understandable to be feeling worried about starting any new drug. The unknown really can be the worst enemy.
As others have already suggested, keeping the lines of communication open with your treatment team can be really helpful. We would encourage you to ask them any and all the questions you have about the proposed drug and try not to hold back if you are feeling worried about anything.
I wanted to share with you a couple of a previous conversations from the past 2 years which offers some insight and also links to some useful tips-
Acalabrutinib treatment - Going through treatment - Blood Cancer UK Online Community Forum
Acalabrutinib - Going through treatment - Blood Cancer UK Online Community Forum.
Should you prefer to talk things through, please do know that our support team is always on hand for you now & into the future- Blood cancer information and support by phone and email | Blood Cancer UK
Best Wishes, Lauran
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Reading how positive some of the reviews concerning Calquence are has definitely helped me.All being well my treatment should start in three weeks time!
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Hi @Ellen49 Please do let us know how your treatment goes in 3 weeks time,
Be ever so good to yourself
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Please keep us updated on how you are doing x
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How are you doing @Ellen49? X
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Hi Ellen, i have been taking Acalabrutinib for the last 2 years, when i first started the drug i suffered quite heavy bruising and joint and muscle pain, this only lasted a short while 4/5 weeks or so, i am now leading a completely normal life, no lymph nodes or discomfort, my bloods have been excellent for a long time now, my consultant is very happy with my progress, i call it my wonder drug so don’t have any fears about taking.
Best wishes on your Acalabrutinib journey.
Brian
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Great to hear from you again @Briank and sharing your experiences is certainly what our forum is all about.
It sounds as if Acalabrutinib really is your wonder drug.
Look after yourself and please do keep posting.
Thank you so much Brian this is just what I was hoping to hear.Ihad a long wait for a diagnosis and then to be told I needed this drug really stressed me.But your experience being so positive has helped me!
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Hi Ellen, I was also wary of Calquence (acalabrutinib) but I now realise how much of a game changer it has been compared with chemotherapy. It is working very well for me after some initial bumps in the road - see my post on “Patient Journey So Far”. Good for the NHS, and the British- Swedish manufacturer. Looking up its cost in America is staggering!
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