I have big news 😦
I went to the doc today and they told me the trial is all over. There has been preliminary analysis of the results compiled worldwide so far – which they always do, like a progress report – and it showed that over all the women studied so far there hasn't been an improvement for those on the active drug compared with placebo. They were looking for a significantly longer time before the cancer grew back, and this was not coming up in the early analysis. Therefore it's not ethical to continue, so they sent out sudden instructions to stop treatment for everyone.
My specialists didn't have many answers to my questions, but more details will come later. No one has been told yet if these early figures show the Fmab is just not helping, or actually harming some people.
They also 'unblinded' the trial, revealing that I was on the lower dose of farletuzumab (not the high dose or placebo).
My doctors and nurses seemed as shocked as me, and said they really didn't expect this abrupt finish. Everyone was very concerned about how I took the news, and very caring.
I argued and said – Oh but the consent form I signed said the drug company would continue to make Fmab for me while it continues to do me some good, and it does seem to be, doesn't it?
But I think I have to accept that they can't prove that it is helping me. My well-being could be a coincidence, or placebo-effect (the power of the mind, believing I'm on a magic potion) or something else. On the contrary they have stats now that prove that overall it is not helping the majority of patients in the trial.
Notice the press release does say it looks like Fmab may be good for a subset of patients. They'll continue to carefully study all the results to understand this better and maybe design a future trial, perhaps one that narrows down to such a subset, eg it could be that Fmab works best on women with tiny tumours on lymph nodes (like me) but not on those with large tumours on organs in the abdominal cavity.
So I had a bunch of final tests today and I'll be back onto 3-monthly check-ups with CA125 blood tests. There are no other trials suited to me at this stage, although several options for people who need further chemo etc.
I'm disappointed because of the crashed hopes, also rocked by such a huge change after 15 months of weekly visits to hospital!
I think I'm still coming to terms with it, but surprisingly I feel I've bounced back after the bombshell. I don't think I'll have an identity crisis from losing my guinea pig role. Unless I'm kidding myself, I think I'm ready to accept whatever is next. Meanwhile, I'm fortunate to be still really well!