My present diagnosis is Advanced Metastatic Castration-resistant Prostate Cancer. What is frustrating is that the original cancer seems to have been cured (by the brachytherapy) so effectively I have bone cancer.
My current oncologist leads a research team and offered radium therapy, a course of six injections at monthly intervals. I had no side effects at all but, although there was some improvement, my PSA was still too high so the treatment was stopped after four cycles and I was advised that chemotherapy was the next option. Another problem was that my wife had had an allergic reaction while accompanying me to one of the scans. I suppose, if you're going to have an allergic reaction, a hospital is the best place to have it. But we think she may be allergic to the cleaning fluids they use, so we decided she shouldn't go with me in future.
I had been dreading the thought of chemotherapy, but apparently the latest research suggests that chemo is more effective if given while the patient is still otherwise fit (and so can better tolerate the side effects). I was booked in for a course of ten IV infusions of docataxel, which is apparently quite an aggressive chemotherapy drug (I hadn't realised there were so many different types). The zolodronic acid was to continue during alternate cycles, so no need for a separate canula.
I've always found that having the canula inserted was the worst part of IV treatment, but at my current hospital they have a whole team dedicated to chemotherapy and the nurses are experts. Not necessarily the same nurse each time but all really helpful and as long as I looked the other way I hardly felt the canula going in.
However, shortly before I had to go for the pre-treatment visit, I developed severe back pain - to the extent that I could hardly get in or out of bed. So instead of going to the hospital on the bus I had to go by taxi, with grown-up elder son accompanying to take me to the ward in a wheelchair. Very frustrating, as I used to do a fair bit of hiking. Anyway, two doctors were called - the resident ward doctor and a consultant oncologist (the nursing staff were very impressed) - and she (the oncologist) booked me in for yet another MRI scan. But she felt it was important to start the chemo regardless, so I did.
The first cycle was a disaster. Not the actual treatment - although I had to attend in a wheelchair again - but the side effects. I had to attend for the MRI scan a few days after treatment and I think I must have upset the whole schedule because when I was called for the scan I was in the waiting room toilets with uncontrollable diarrhea. I had previously kept the taxi waiting with the same problem. So by the time the scan was finished I was so dehydrated I was admitted and put on a drip for 36 hours. Kept in isolation too - in case I was infectious. In the event though, all was OK, and I was able to go home, with tablets to control the diarrhea and a telling-off from the nurse in charge for not phoning them immediately I had any symptoms.
Subsequent cycles went much better. I was able to get to the hospital by myself, on the bus, and at first the only inconvenient side effect was a loss of taste sensation during the middle week between cycles. And general weakness resulting from low red blood cell count. For that, and low white blood cell count, I had to have injections which fortunately my wife was brave enough to administer. But I lost my beard - which felt really weird - and my hair fell out in tufts. I couldn't really complain about that though - many men younger than me are completely bald. And it's growing back.
But after a while I did notice my fingernails were developing ridges - one for each cycle, like tree rings - and they were becoming discoloured. My toenails were much worse - almost black. And I was developing neuropathy in my hands and especially my feet, so walking was becoming more difficult. By the fifth cycle it was so bad that the dose was reduced for the sixth cycle and then treatment was stopped altogether in June this year. No chemo, no zolodronic acid, no calcium tablets, just the tamsulosin capsules I was prescribed after brachytherapy and will have to take forever.
Fortunately, it seems to have worked. My PSA dropped drastically and I seem to be in remission - for the moment. There is no cure though - not for the present at least - but research is ongoing. I was given a further MRI scan and things seem to be OK at present. A full-spine MRI takes over an hour, incidentally. The plan now is that I will have another combined gamma/CT scan early in the new year and take it from there. I have been reassured that there are still plenty of options - I can have external beam radiotherapy on selected areas of my spine where the tumours are, a different form of chemotherapy, and a more aggressive type of hormonal therapy.
But to an extent I feel guilty that I must be costing the NHS a lot of money, and I hope it doesn't have negative consequences for younger people. People with young children, for example, and teenagers. I taught a girl who was desperately trying to keep up with her GCSEs whilst having chemotherapy and it made me really sad. I left the school shortly after and have no idea what the outcome was, for her. But at least at my next school I was able to facilitate - by helping with logistics - a group of girls who were raising money for the Teenage Cancer Trust.
I did develop a fungal infection in my toenails (reduced immunity because of chemo) but a course of antibiotics fixed that. But my GP yesterday prescribed a third two-month supply of terbinafine tablets to help with the toenail issue. He is convinced that bright shiny new toenails are developing under the old, blackened ones, and that eventually the old ones will be pushed off without exposing the nail bed.
The darker parts of my fingernails have broken away from the new growth, but only once they had extended so far they were like talons. I couldn't cut them - they were too hard. But the new growth is fine.
The oncologist recommended continuing with the triptorelin injections so yesterday I booked an appointment for next month. I asked if I could have my flu jab at the same time and was told that it would be better to have it immediately, so a nurse came and stuck another needle in me. To think I used to be scared of needles! She did say that the flu vaccine is even more important for people who have had chemotherapy.
So that's it, up to date. My wife and I had hoped to do a bit of travelling once we retired. That won't happen now - not to any great extent - but if the results in January suggest I won't need ongoing treatment for a little while, we might manage a couple of short trips to Europe. Won't risk going further afield though. Fingers crossed!