My Patient Journey So Far

I first noticed a lump on my neck in spring 2006 at the age of 55. A visit to the GP sent me to hospital where I was later told by a consultant very brusquely that I had leukaemia. "Why are you looking so shocked ? " she asked in a heavy accent “You can expect to start chemotherapy when you are 60 and live to you are 70”. Leaving the hospital I almost burst into tears, thinking that was going to die. I then went on watch and wait and received the welcome info that I had a slow growing but incurable cancer called Chronic lymphocytic leukaemia (CLL), and I could expect to live for many years. Well I was on watch and wait till April this year - for 18 years! By then my spleen had become greatly enlarged though I never suffered from any night sweats, although I had lost a little weight. I was fortunate to be suitable for Calquence (acalabrutinib) and within 3 months my spleen had greatly shrunk and is now normal. However, my new consultant ( one of many new ones) put me on Allopurinol at the same time and I was given antibios to take 3 times a week (Septrin). I didn’t take any antibios because I have read that being on them long term is not a good idea. About 3 weeks after starting treatment I came out with a red rash on my head and was told it was the Allopurinol and I must stop it which I did, permanently. I also was suffering bruising in various parts of the body and this continued before I discovered the cause from a super website which shows up interactions between meds. I had been taking Candesartan Cilextil and Amlodipine for high b.p since 2007 and the website flagged the interaction between Acalabrutinib and Amlodipine. Later a locum consultant confirmed that and I stopped Amlodipine permanently as I had done with Allopurinol. The bruising stopped within a fortnight or so and hasn’t come back. The one downside of the treatment is that I have developed an irregular heartbeat, although ECG’s have shown this is “nothing to worry about”. I have put on over 2 stone since starting treatment. All in all Acalabrutinib has been a very successful treatment. I hope my patient journey may help other patients.


Hi @Unidentified a great big welcome to our forum.
Thanks for your patient journey
Mine has some similarities as I was diagnosed by a gynaecologist and he blurted it out to me and said he could do no more for me and to go to my GP.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2003, aged 53 yrs old, my life expectancy 5-10 yes.
I have been a lucky girl and been on watch and wait (active monitoring) ever since.
I have been allergic to Septrin since the 1970’s.
I do get unexplained bruising.
I was diagnosed with an irregular heartbeat about 15 yrs ago.
I have also had other health challenges since my diagnosis.
Look after yourself and please do keep posting.

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Thanks Erica. The first 74 years are the worse. I find that following a large dose of of whisky and lemonade I feel great!