I know some of you have been following my story since being refused treatment with Ibrutinib as NHS England decided not to follow NICE guidelines.
I'm currently being reviewed on a 3 weekly basis. I was put on sreriods antivirals and antibiotics to treat the symptoms not the cause. The steroids helped with the fatigue and sweats and did lift my spirits. My consultant and the hospital team still think Ibrutinib would be the best treatment but can't use it. We discussed having FCR but he's against that for a number of reasons. The plan is to get me through to August when there maybe a new trial of a combination of drugs one of which is Ibrutinib. So I am to continue with this trio of drugs. If I get unwell to call the consultant and the plan then is to boost me with IV sreriods for a week on a Monday Wednesday and Friday. Hopefully by that time the trial will be available and he's already said I meet the requirements.
If anyone still has not signed the petition regarding Ibrutinib please do. It could be you next.
Stay well all.