Next stage sooner than expected

Dear Marje
I'm so sorry to hear about your Tony's rise in psa, it must be so worrying.
I was diagnosed with a psa of 235 in Dec 2014 and have been on HT and enzalutamide since then (on Stampede Trial).
My psa has fallen significantly and up to last oncologist appointment was still very low. I've just a few side effects. My next appt is 2nd Nov.
I really hope that the enzalutamide works ok for your Tony as it has so far for me.

Paul

Thank you both for your sympathetic replies. It means a lot to talk with people who understand what we're going through. I will update here with any further news.
Marje

Hello Marje
I'm sorry that there has been a "hiccup" in Tony's treatment

Here's hoping that it is just a blip and can be sorted out with any of the other tricks in the consultant's box.

Fingers crossed for you both

They did another PSA test just to confirm the rise before commencing scans. It had jumped again, from 19 to over 30 in a week. This is not what we wanted to hear. We are worried and anxious.

So this week it is CT scan and bone scans, then another PSA test prior to the next oncologist appointment on 2 November. In between all that, we are off to visit family and friends for a few days. We are bracing ourselves for the next consultation (with an oncologist we haven't met before), and hoping for some more realistic prognosis than the very vague ( and very optimistic) ones we've had so far. We think we would find it less difficult to cope if they were honest than if they just keep saying, "We have really no idea what's ahead, you could go on for years and years." That's becoming less credible now.

We have booked a holiday to Thailand in the new year, but three weeks at the other side of the world seems perhaps a tad ambitious now. We'll see what happens at the consultation and what the new treatment will entail. For now, Tony still seems very fit and well - it's hard to believe he has very aggressive cancer (his initial PSA was over 2000).

Piglet, did they test his testosterone? Is he still at or below castrate level (0.69)?

Not really a formed thought Piglet. But the two situations are quite different in their implications which was why I asked:-
a) PSA rising, but still at castrate level suggests that the cancer has learned how to survive without testosterone
b) PSA rising and T above castrate means the HT isn't working effectively

Some oncos would reintroduce casodex at this point to disguise whatever testosterone is still floating about - or would try another hormone. If the cancer has learned to feed without T, then it might be better to knock it back with other treatments like enzo, abiraterone, chemo. Look at how well Devonmaid's OH has done on stilboestrol which is considered quite old hat now by many oncos. I know you are reluctant about chemo but some people find the second bout provides more respite than the first - at the moment you don't know how weakened the cancer cells are and another onslaught might kick their butts.

Right, so Tony had his hospital appointment today and we are a bit clearer about what lies ahead. PSA had shot up to over 80 by a week ago (from under 5 in July), so it's obvious the cancer is ignoring the hormones and galloping away. ALPS is also high, and T has begun to have pain again, in one hip. The oncologist agreed that all this needs urgent attention.

The plan is to start on Enzalutamide within a week, and if this appears to be working, to add in Radium 223 in a few weeks. It comes off the Cancer Drugs Fund list in 2 days, he says (4 Nov, does this make sense?) but if he applies today it should be OK. Zometa will probably be added to the mix later on.

If T's cancer fails to respond to the Magic Beans, it looks as if cabazitaxel is the next (last?) resort, and may well be a later option in any case.

The outlook is pretty bleak, and the time scale much shorter than we had been led to hope. But we feel a little better now that the battle plan has been drawn up.

Marje