Hi folks, i've not posted for a while as been having 6th line chemo of carboplatin and caelyx since March and been fairly well on it. It seemed to be working as CA125 went down nicely and then my white cells were really low and i had a long gap after the 4th session. Thats when CA125 started to rise again. Anyway I went for scan and blood test results today and was really shocked as CA125 had risen to 1330 (it was 740 when I started chemo) and there are lots of bits of cancer on my liver although the tumours in my peritoneum and omentum have shrunk a bit. My doctor knows I need a rest from chemo for a while but is suggesting the rotterdam regime with cistplatin which I have certainly heard of and sounds pretty awful. I asked him how long he thought I'd have with no more treatment and he said about 3 months which really upset me. I feel really fit and well at the moment and have lasted 11 years with this horrible disease and been lucky that its been pretty slow growing up to now but it seems to me that its just taken off now and i can't see how any more chemo will work.
If you've had experience of the rotterdam regime i'd really like to hear from you. Also if you have any knowledge of clinical trials that might be worth trying please.
I have been really lucky to have lived this long with this illness and to have met my beautiful granddaughter LIly (now 18months) but I am doubting that i';ll meet my next grandchild due in May and it makes me very sad. I will pick myself up and do all I can with alternatives, complementaries and medical treatments. Any support, info very welcome. Thank you
love Francesca x