Thanks everyone for your replies.
The locum oncologist felt that there is evident progression because the marker went up and also because there has been fluid build up in the abdomen, which in his view only happens if you have progression. Does anyone know if this is true?
The normal onc is back Monday week, so booked to see him and having a one week med break. Which may be a good thing due to fatigue. The drug has been well tolerated for 9 months now.
I'm sure he will send for PET and CT and then make a decision.
We have gone to the Garvan Institute and entered into the MoST program for genome sequencing of the tumour samples. Unfortunately all the mutations found do not have any drugs associated at this point in time. At least the tumour samples will help in their research for others some day.
The only thing they could suggest at Garvan was giving immunotherapies a go but there isn't much to support it's use in ER + breast cancer at all. In fact we know people that got very sick on it for no benefit. It's shown positive results for triple negative though.
Given that, although there's a lot out there I just think options have run out. The liver has been in failure already last year, which was very unpleasant. As a result of the damage I doubt hard drugs and chemo could be tolerated. Without good organs these drugs are useless. There was a lot of abdomen fluid during liver failure in which draining was needed. If there is fluid starting again it makes me wonder..
Thank you ladies for replying. It is such a horrendous thing to deal with and so unfair.