Flair Trial Completed

[Sanphil]

It’s official I have completed 6 years of taking part in the I. & R Arm of the Flair Trial today . I started on 28th January 2018 and I took my last dose of Ibrutinib today 28th January 2024 on the Flair Trial.

It feels quite surreal. The accomplishment of completing it, coping with side effects and now wondering what to expect in the future. I have always been of the mindset that the 420mg Ibrutinib taken daily was always working to the good for my CLL and now it feels as though I have to think more positively then ever that the good will outlast the bad.

I would be grateful for any thoughts from likewise members finishing this same trial.

Sandra x

[annmcgowan]

Hi Sandra I am in the same post as you. My 6 years are up in March. I am going into the static trial then where I will be randomised to continuous or intermittent ibrutinib. Have you been offered static? If you are will you take it.

Ann

[Sanphil in reply to annmcgowan]

My hospital Research Team were going to start the Static Trial but there are no qualifiers to partake in it. After consultation with my care Team I am going to take a break from entering another Trial at the moment but I wish you well in the Static one. Sandra x

[annmcgowan]

Good luck to you too.

Ann

[Smakwater]

Thank you for your participation Sanpil.

Clinical Trial Research is the key to the availability of better drug choices.

JM

[Sanphil in reply to Smakwater]

Thank you fir your comment.

[CoachVera55]

Congratulations & Thanks 🎉🎉🎉

[Sanphil in reply to CoachVera55]

Thank you for your comment

[jkl700]

I have been on Ibrutinib for almost 6 years since 2018 after two sessions of chemo, stopped due to goldbadder removal. I started with 480 mg then after two years down to 280 and another two years down to 140 mg. I have been asked to join STATIC trial, or rahter stop taking Ibrutinib and see what happens. I am searching to see how others have coped when they stopped Ibrutinib. How soon the CLL can come back? I would welcome the stopage as my muscles ache, I am stiff and getting depression? Isn't that one of the side affects. Ibrutinib has been very good to me, maybe it is time that I stop. I am seeking answers as I need to make up my mind in a week. Thanks,