splashsplash

[splashsplash]

UK based,

CLL for 15 years,

Treatments: FC, FCR, Ibrutinib, Venetoclax for 2.5 years, 6 month break now back on Venetoclax

[Candy62ZS]

hello splashsplash, I was diagnosed in October 2023. Can I ask when you first started treatment? I am also in the UK.

Zxx

[splashsplash in reply to Candy62ZS]

Hi Candy

From dx to first chemo treatment with FC was 2 years. I got 4.5 years remission from that then had to do FCR but I only got 18 months remission for that. Then I went on Ibrutinib for 6 years after that I mutated to P53 and went on Venetoclax for 2.5 years. The new immunotherapy drugs are so much better and I hope I can go on Pirtabrutinib when I need to. Good luck with your treatment path if you need to.

[Candy62ZS in reply to splashsplash]

I’ve been told that I will need to have treatment because my bone marrow is v heavily infiltrated with CLl 😢

Hopefully it won’t be too soon though but the fatigue is really getting me down xx