CLL - starting treatment

Hi!

Age 47, female, I was diagnosed with B cell Chronic lymphocytic leukaemia (CLL) a few years ago, I’ve been watch and wait, but now starting treatment - Ibrutinib and venetoclax.

My first lot of drugs arrived today, so I guess I’m starting treatment tomorrow. It’s all just pills to take at home

I have 3 additional drugs to take alongside the Ibrutinib - Allopurinol, Acyclovir, Co-Trimoxazole. This is for 3 months then we introduce venetoclax.

Has anyone else taken the same drugs? Any advice, recommendations? Or just how is it going???

Thanks for any response

Linda

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Hi, I have been on Ibrutinib - Allopurinol, Acyclovir, Co-Trimoxazole for about a year. I was taken off Allopurinol last week. I have not experienced side effects other than plenty of small pink spots, especially in the early months. I don’t think that I will be going on to Venetoclax at least that has not been mentioned, I am on a clinical trial. I know we can all react differently to medication but so far I haven’t experienced any issues and according to the consultant I am better than I was this time last year, (although I don’t always feel it!) Good luck.

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Thanks for replying Steve, I really appreciate it! And thanks for sharing your experience, I’m trying to stay positive and I’m really hoping I don’t get any of the side effects.

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