In August 2012 through a wellman check up I was called by the doctor and told my PSA was 3.8 and that to pop back for further checks possible infection. He gave me antibiotics and a DRE this he said was normal. October another PSA this time 4.6 another DRE with a different doctor and again normal but sent for a biopsy. Results of the biopsy I received 24th December by phone Gleason 9 and that scans had been booked for January 2nd.
Not the best Christmas I have ever had but duly arrived for my scans MRI. CT and bone scan all on the same day. 8am the next morning I was phoned by the radiographer consultant to go very careful as my left fermur was about to break and a urgent appointment had been made to see a oncologist that day.
I still remember ringing the wife at work and saying just had a phone call and it might be a bit worse than we thought.
So that night I met my oncologist and I am so glad I got this one, young, very much on the ball and happy to bend a few rules. He had discussed my case with the orthopaedic surgeon and he was happy for me to start treatment and deal with the fracture if and when it happens
So the next two weeks he threw the kitchen sink at it, 5 shots of radiotherapy to the hip, started Zolodex and Denosumab and Chemo, 9 cycles. by cycle 4 PSA was undetectable and has stayed there ever since.
Finished chemo in July 13 and was started on Abiriterone. I stayed on this till January 15. I then stopped to see what would happen. well nothing has, PSA still undetectable still having zolodex.
I have scans coming up in the next couple of weeks then the plan is to go back on the attack again, either restart Abbi or enzalutamide and radium 223 together.
Busy week last week, Bone scan no progression, CT scan no soft tissue involvement, SPECT scan just a tiny progression in the pelvis area, but all good.
PSA is still <0.01, met my Oncologist and my plan was after having undetectable PSA for 30 months now to take a break from HT and see what happens. NO........ his plan is to start Enzaluamide in January for maybe four months then stop them for a couple of months then back on Abbi.
His plan is to keep confusing the cancer and probably me to.
Time for my update,
I stopped all treatment last year with my last HT in September, my PSA has remained undetectable until last month.
Had a meeting with my onco who wanted me to restart treatment but I decided to leave it another month to see my next blood test results.
I am now three and half years since a pretty crap diagnosis and so far I have not had any treatments fail me, I had great results from chemo that I received straight after diagnosis, two years on Abbi only stopping it for a break and HT was still working fine.
So I think the time is approaching to start thinking of my next treatment, I have played around with most of my treatments, I have even had to document it for my onco. So my nice break is fast coming to an end, such a shame I have really enjoyed it.
A late update,
After stopping all treatments for nearly a year except Denosumab my PSA started rising quite quickly;
It was now that i was put under pressure to restart treatment, feeling totally ganged up on I agreed. was meant to have 4 weeks of bicalutamide then restart zoladex but gave the bicultimide a miss.
So after 4 weeks of restating treatment PSA went down to 0.4 then 0.11 then 0.09, decided to stop treatment again but this time with the agreement of my oncologist, the plan is the wait for the PSA to reach 2 and in my oncologists words we are then going right of piste.
I have a great amount of respect for my oncologist, this is the guy that started me on chemo straight after diagnosis 4 years ago before any trial information about early chemo was available. i really owe him a lot.
I wish everybody a great new year.
Si's e-mail address is: firstname.lastname@example.org