Coming of Ibrutinib

[john133]

Hi There, I have been on Ibrutinib for CLL for five years now, I have never felt really well while taking it and still suffer from fatigue and I do not really enjoy doing things anymore although I make the effort to live as normal life as possible. My consultant says he is taking me of Ibrutinib he says I have had enough!!!! I don't quite know what he means by this. is it because I am 76 and the cost of keeping me alive is to much for the nhs because that's the impression I got. Has anybody got any answers?????

[seelel]

At a wild guess, I would say that your consultant is taking you off Ibrutinib either because you are no longer responding to it, or your blood results are such that it's time for a break from therapy. I doubt that the NHS would deny you treatment for financial reasons, but I may be wrong - I don't live in the UK anymore.

Perhaps you need a conversation with your consultant on what his next move is.

[MsLockYourPosts Passed Volunteer]

In your shoes, I would definitely ask for the reasoning behind this , and what the plan is for the future. If you aren’t comfortable with the answers, look into a consult with a different doctor. Others here who are in the UK can give you better advice as far as how to go about that. Giving your general location would be helpful as far as people recommending specialists or how to deal with the NHS.

[Jm954 Administrator]

With any treatment there is a balance between the benefits of taking it and the side effects.

He may want to take you off to see if you feel better off it. It may be that your Dr feels your fatigue and other side effects that make you feel so unwell are no longer worth the benefits of staying on Ibrutinib. If you're in remission then that may be safe and you will stay in remission then if you need to restart you again you can but that is unpredictable so a long, honest discussion with your Dr is important here.

Jackie