I have been on Ibrutinib since feb 2013... I have been in clinical remission for 8 months + .
I was in a clinical study for the first 2 years and at the end of that time I was asked to sign up for another study that lasts another 2 years...... This time I will only see the MD every 6 months with a CT Scan every year.but I will have to take 3 pills a day ( Compliments of the study)...I signed up for the additional 2 years but after 6 months of it with all my other problems (apnea, CAD, hypothyroidism , Hypertension , Pulmonary hypertension , knees that need to be replaced but will never be .) I am obviously having second thoughts.
Is Ibrutinib a drug that you are on for life?? The fact that I am getting it for free is a strong factor to continue on the trial , but the fatigue and strange other things that are popping up are telling me to drop out of the trial ...I feel that it is making what little life I have left is not the quality of life that I want and Ibrutinib may be causing some of these problems...Today I am going to ask for a 2 month holiday from the study see if the fatigue and other problems go away.
I need advice here as to what the drug is designed to do once in remission.. And what would you do?