I have been on the UK NHS clinical STAMPEDE trial since December of last year, randomised with standard HT and Celecoxib (4 x 200Mg a day).
Due to the fantastic response of HT (PSA down from 136 to 1.0 in 9 weeks) I was given a good prognosis that they could keep me going for many years to come, at least until better treatments and drugs are available. The not so good news is that my PSA has gone up again from 0.4 to 0.6, doubled since April. Still extremely low but the trend is upwards (136, 1.0, 0.3, 0.3, 0.3, 0.4 - 0.6). Oncologist thinks it is probably a blip but I have heard that one before. Seems to me I am on that slippery slope !!
Oncol states that she will monitor the situation but the North East Thames London area protocol is not to do anything until the PSA reaches 20 (at which stage the cancer begins growing/spreading again). Will not add Casodex in until then as they like to keep it in reserve and dosent think it would help to start it earlier - quite the contary. From what I have read of other prostate cancer patients in the UK Casodex is added in a lot ealier than a PSA of 20 and don't understand why Oncologists and Urologists can have such widely differing views !
I have another blood test for my diabetes in a months time which I asked my nurse to add in PSA. Oncol strongly advises against it as no significant change will happen in a month. Don't think I can resist it though. 20 does seems though an incredibly high PSA level to wait before adding in Casadex, I can understand the reasoning behind keeping Casadex in reserve to a certain extent but would it not be better to know if it is not working at an eralier stage when other treatments such as chemo can be used on a lower PSA and reduced tumors?