New Year 2013 extreme pain, trying to wee and pooh simultaneous, big hip pain.
March 2013 PSA 54 Gleason 9, mets detected by scans, Royal Marsden Surrey were marvelous.
Two years in the graph of PSA is climbing. Zoladex every 3 months.
Had EBT in 2013 (August) and just now a dose of 8 Grays on the original right iliac met, helped a bit.
Slowed up a lot, can only now shamble about, very poor leg motor control
Monday (Jan 5th 2015) going to get enzlutamide tabs, as an add on to the Z's.
Think I'm looking down the end of the barrel but, still enjoying grand-children as long as poss.
Good luck and the best for the New Year to you all.
Updating the original diagnosis, and to explain some of the then bewildering treatment choices, I happily went on to the "Stampede" trial path. The randomising computer of the trail scheme chose to put me into Group H, which was to continue the hormone therapy (Zoladex) but to get targeted beam X Ray on the original Prostate site. Looking at the first year's PSA graph indicates that this worked well, dropping the original 54 down to the twos's, and enabled me to work on, part time, for a year longer.
By the end of the second year since diagnosis (not long before Christmas 2014 now) the PSA rate of climb became noticeable. Also hip sensation where one of the original bone mets was. I asked for local EBT which the Royal Marsden sorted for me - I don't think that was anything to do with Stampede. Anyway after a short flare up it worked, but PSA continued to climb and my consultations were made much more frequent, even squeezing me in just before Christmas (Thank you RM!).
In early January 2015, I was put onto Xtandi, which are enzalutamide tablets, because the Zoladex only controls prostate generated Testosterone. There are side effects to enz' which is why they don't dish it out willy nilly, apart from costs, but it suppresses all T including from adrenal glands and the cancer cells themselves, so adding it to Zoladex seemed logical to me.
I only have the PSA result from just before starting Xtandi; 43 (compared to 54 original two years ago). This represents a steepening graph of PSA against time, not nice. February 4th 2015 I have just been to 4 weekly consultation, picking up the next lot of pills, and I'll update the effects of the added hormone shortly.
After a big scare last Christmas with PSA rising to nearly the 2013 diagnosis levels, Bicalutimide had only small retardation so have been on combination of Zoladex continuing with added enzalutamide (Xtandi) horse pills.
Single shot 8 gy EBT dose in spring to right iliac - site of original bone mets - pain flared for a couple of days, none since, yippee!
Osteoporosis evident and taking Alendronic acid pills with Calcium plus Vit D3 supplements twice a day.
Very hard to muster the will to do things, the wobbly legs make any kind of walking exercise a big effort, now with a stick all the time. Notice many men at Royal Marsden use sticks.
The day after the weekly Alendronic pill tends to be a wipe out with loose bowel movements, the rest of the week not so bad.
So that's two and a half years since advanced metastatic PC diagnosis, and still living within energy limits. Bone scan this summer indicated "some more spread" but apparently nowhere specially serious like the spine.
Good luck all.
I have been on Zoladex jabs since diagnosis (spring 2013) and the Royal Marsden (UK, Surrey) added Xtandi enzalutamide in early 2015, as my PSA was again climbing - I keep a time graph of my scores. After about 13 months of lowered PSA - the Xtandi worked in other words - the scores started a gentle upslope again, currently 28.
By the way, it helps to keep a timeline of all the various treatments as it can get confusing after a couple of years. I use a spreadsheet so my PSA score is plotted as a graph over time, but it also helps when the GP asks 'when was your last bone scan' or 'when is your next MRI due'.
The RM have been great, and they see me on a 4 weekly rota now, to review blood tests and also a 6 monthly MRI to compare spread of the nasties. Next MRI will be September, no worries as previous comparisons did not reveal unusual spread and as yet I have no bone pains. It is worrying slightly that the RM keep asking me about pain, almost as though they are surprised there isn't any after 3 1/2 years!
My wobbly legs and general tiredness are apparently normal for the dual ADT treatment, but I can still manage to get around and look after myself. I elected to join every research scheme offered including a genetic survey - might as well be some use for future sufferers. I was considered for a new un-named drug trial, aimed at castrate resistant patients on dual ADT. However, my very bad drinking habits meant that the drug sponsors (GSK) would not go ahead, even though the PSA scores have started climbing again. So, a word of warning to everyone; make every effort to cut the booze right down as the alcohol toxins render some treatments coming on stream ineffective. I'm trying hard to get 'clean' for that reason.
I will report in again after September's MRI, meantime good luck everyone and remember, join every research scheme you are offered, it not only helps you feel smug but it seems to get a lot of extra attention. Hard to tell that last point because I'm so lucky to live near the RM, a centre of excellence and indeed kindness, all the staff are wonderful.
Robert's e-mail address is: firstname.lastname@example.org