Medication after trial ends

[megbrook]

My son has CLL and has been on a Flare trial for five years. This has kept him reasonably well. What happens when the trial ends? Will he be kept on the same medication? Has anyone had experience of this?

[annmcgowan]

Hi I am on flair trial too , 3 years plus on ibrutinib, which has kept me very fit and well. This will continue for 6 years then it will stop. I have been informed that once this ends I will be invited onto the static trial which will be looking at the advantages of a drug holiday, off drugs, for some and remaining on drugs for others. Some people on the trial have already reached the 6 years so we should have a lot of information on the subject matter by the time I get there.

I suppose what will happen to your son might depend on the arm of the trial he is on and the drugs he receives, you did not give this information.

He may need to take this question up with his consultant. I did and this is what I was told.

Good luck

Ann

[megbrook in reply to annmcgowan]

Thank you Ann. He will talk to his consultant. He is on Ibrutinib.Hope you stay well too.

Regards,

Meg

[Newdawn Administrator]

This explains the Static Trial Ann mentioned to you;

cllsupport.org.uk/important...

Best wishes,

Newdawn

[megbrook in reply to Newdawn]

Thank you so much. That link is really useful and reassuring.Regards,

Meg