I'm new to this site, so here's my story so far:
Two years ago (when I was 68) I lost my appetite and began losing weight - I went from 12 stone in April 2014 to about 10.5 stone over two or three months. My doctor did not start doing blood tests until June of that year and did not include a PSA test until July, after I had suggested it and whilst I had been suffering increased back pain. By that time my PSA was over 4,100 and my haemoglobin was down in the 90's. I was swiftly sent to the urology specialist, given the first of a three monthly Triptorelin injections (which continue), sent for a biopsy and the day after checked myself in to A&E at the Western in Edinburgh.
They kept me in and I was flat on my back for a week until they could set up a planned spinal operation to remove most of two and part of two vertebrae and fit titanium rods. Apparently another two or three weeks and I would have been in a wheel-chair, even now. My Prostate Cancer had resulted in Metastatic Spinal Cord Compression (hence the operation and, of course the general spread) with the only good news being that it stayed Prostate Cancer wherever it was.
By the end of August 2014 my PSA was 0.1. In January 2015 it began to creep up and by the August 2015 it was 6.6 at which time I was given Bicaludimide. This was fairly ineffective and by November I moved on to Dexamethazone (PSA 9.2). This too did not seem to work (January PSA 41) and I started three weekly Chemotherapy (Predisolone with Dexamethasone the day before, on the day and the day after Chemo plus Metoclopramide continuously) in February (PSA 99.8).
My latest bone scan shows widespread, small, hot spots and my PSA has bobbed up and down (mostly up) and is now 133.
Perhaps surprisingly I feel pretty good and am managing 10,000 steps most days (partially weather permitting). I am on various other drugs (Amitriptyline - for tingling in my feet and legs, Tamsulosin & Finasteride for assistance with urination, Alendrodic Acid for Osteopenia and Ferrous Fumarate to boost my haemoglobin levels which are still not up to normal although I have not needed any blood transfusions since just after my spinal surgery). I was also on low dosage Morphine (MST Continus) but I stopped it last week in case it was masking and pain from the hot spots - so far mostly imaginary twinges.
The oncology consultants will only give "months or years" type of prognosis, but at least it's not "weeks or months". I take comfort from the fact that I was relatively fit before the problems arose and feel pretty good (considering) even now.
One of the drawbacks of the Chemo is that I shouldn't travel too far from the Western - no cruises or travel abroad in case I catch something and/or am not able to get back to the Western. I've already had to be checked in to the Western with mild pneumonia and this delayed my next Chemo by a week.