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O.K., thanks. That's a bit clearer now.
A poor story re-diagnosis, and not unique. It does happen sadly. I was fobbed off by a GP which delayed my own diagnosis.
However, it's time to move forwards rather than get mired in a blame game, which would not alter the current situation.
The Stampede trial is considered a good one due to the extra attention. Unfortunate if only on the standard treatment arm, but this is not less than standard treatment.And you get extra check-ups.
The usual situation is to check the psa is dropping and see how far down it will get. The lower the better is correct, but you have not reached a nadir at this time. I understand that psa has already dropped from over 1000 to 300; showing a good response to the hormone treatment.
Once the psa has dropped to nadir, it is usual to see if this can be maintained. If not, then another treatment is added.e.g. Casodex.
Personally, I would like to see your Dad on injection ( Zoladex ? ) plus an anti-androgen such as Casodex + a 5-alpha reductase-blocker such as Avodart + a good Vitamin D3 supplement ( perhaps 5000iu per day )Use of Zometa might be an advantage sooner rather than later, but that depends on the Oncologist.
From what you say, it doesn't sound like the best time to use chemo. If your Dad is run down, the hormone treatment may give him a chance to build some stamina. Chemo is usually only undertaken here when hormone treatment is deemed to have failed. This stage has not been reached.
I suggest that the psa is being watched and IF it does not come down sufficiently or starts to rise again, more thought will be given to chemo. But you ain't got there yet !
If I was your father I would abandon all trials at this stage so as to prevent any hesitation on any treatments you want to try. Read as much as you can so you know what and why treatment is being done. Try for maximum testosterone reduction and anti-androgene at this stage. Get weekly or more often PSA tests so that if the PSA starts to go up they can jump right onto the next chemo drugs.
They may be considering quality of remaining life issues but if it was me I would want them to give me everything they've got.
You might also want to read Pradeep Raj's (PSA 63)case who is in India and is fighting a similar siuation. They seem to be giving him everything possible and some of the drugs work but you also have to keep trying something new as soon as the old one stops. Also your Dad should be getting some spot radiation treatments where possible to reduce pain.
Thank you so much for all your replies ,Rob that is the injection he is on I think & prior to having his 1st injection he had to take a daily tablet for about a month , think this may have been Casodex but not 100% on that he is not taking it anymore, the oncology nurse rang back & said if his pain is bad he needs to see his GP especially if any pins & needles ( not sure why this ?) & they can do radiotherapy on certain areas if necessary, he has an appointment with the consultant in a couple of weeks,thank you all so much x
I'd guess the reference to pins and needles is because this might be a sign of pressure on his spinal column where compression often develops if the bone is damaged by the tumours.
Terry is correct. Any sign of numbness or pins & needles in the legs may be a sign of spinal cord compression. A possible effect of mets on the spine.
Please note "possible" and "may be".
Any such symptoms for those with confirmed spinal mets should refer to consultant without delay. This was emphasised to me at a talk on the subject by a specialist.
One can leave a trial at any time and revert to standard treatment. In this case I would only leave such a trial if absolutely certain that additional gains would be made.i.e. the Consultant is willing & agrees to add further treatments which might not be allowed on the trial.
