Discontinuation of ibrutinib

[nicolas_12]

Hi everyone! It´s been a while since my last post. My mother continues taking ibrutinib, almost 3 years now and doing fine. But right now she has to prepare for a digestive endoscopy, which is ineluctable, so she has to discontinue ibrutinib treatment. My mother is very sensitive to these kind of discontinuations, last time she stopped ibrutinib the white blood cells count went up like crazy in a few days and nodes increased. We don´t want that to happen again. If anyone has any suggestion, I would be grateful.

[cajunjeff]

From what I have read and understood, lots of folks take days off Ibrutinib for similar medical procedures and that these short treatment “holidays” have no impact on the long term benefits we get from Ibrutinib.

I would find out from her Cll doctor how long before the procedure she should stop taking ibrutinib and how long after should she resume. Other than that, I wouldn’t worry about it.

I think for most folks, stopping ibrutinib for a procedure is precautionary only. I don’t know how they assess the bleeding risk from patient to patient, whether it be platelet count or something else.

So long as she is suspending ibrutinib for the duration suggested by her doctor, I really wouldn’t worry about it.

And this time might well be a different experience for her. She has been on ibrutinib for three years now, so she might not experience any node issues. If her wbc goes up, Ibrutinib will take it back down.

[PlanetaryKim]

Hi Nicolas. I have same problem as your mother - my CLL 'returns" very quickly when I briefly stop ibrutinib, which I have had to do 3 times in last 22 months. Swollen nodes and night sweats are back within 72 hours off ibrutinib. But the 2nd week off, my cytopenias start returning. It's not pretty. These symptoms all go away just as quickly when I resume the ibrutinib. I wouldn't want to test that too many times, though. But we do what we have to. I think your mom will be okay with a short stoppage. 1-2 weeks is the stoppage usually recommended for surgical/medical procedures where there could be bleeding.

Good luck to your mom!

kim