HighCadence Posted November 13, 2018 Share Posted November 13, 2018 When I put up my last post, I expected the follow-up to be fairly straightforward - you know, radium 223 has worked a bit, but only a bit, and I’m moving onto something else/PSMA targeting/immunotherapy. But, that hasn’t really happened. The prostate cancer had other ideas. I’ll come to that, but first I want to say a little bit about the radium treatment. For me, it was fairly uncomplicated. The main side effect was lethargy - especially for the first few days after the infusion - with the feeling that you’d literally just walked into a brick wall. First time round, I decided to rest up for a few days, but, I soon found out that if you push through the lethargy - by going to the gym or similar - you actually feel much much better. So, I’ve just carried on exercising as often as possible ever since (I had my second infusion last Wednesday). Apart from that, I’ve had a bit of a temperature, a bit of bone pain, and a bit of brain fuzz at the start of the cycle, although the latter could just as easily be stress related as treatment related. So, that’s the radium. Relatively easy overall. Whilst all that was going on I decided that I needed to try again to sort out some long stranding problems that I’ve let slide for too long. There was mixed news on this front. A surgeon told me that there was nothing that could be done about the loss of nerves/muscle control in my abdomen, and that I basically just had to suck it up (my words, not his). I have to admit, I had a little cry after that one. More positive new came from an endocrinologist who worked out I wasn’t diabetic or pre diabetic, which is good, although I would like to have a reason to try some metformin. He also decided that I could produce enough cortisol on my own to be able try coming off steroids (I’d previously been diagnosed with adrenal insufficiency after years on Abiraterone with a steroid). Finally, he thinks that my continued low levels of potassium and magnesium years after ending Abi is probably a reflection of damage to the kidneys caused by Carboplatin, which I’ve had twice. I have vague memories of being warned about this before the second round of this treatment, but had completely forgotten about it. We’re not quite there yet in terms of a definitive answer, but if the latest blood test I’ve had shows I’m still low on these minerals/things haven’t changed having stopped the steroids, I will either take something to help me retain them or take something to offset their impact i.e a narrowing of blood vessels. I’m hoping this will help with the shortness of breath issues I’ve had for a while. Put all of this together, and I was feeling pretty confident about getting out on the bike again. So much so, that I put new rim tape, tubes, and tyres on my two best bikes, batteries in the power meter and charged up the bike computer. I even bought a new jersey (two sizes bigger than the last one I bought). And then the cancer had its say. To cut a long story short, my latest MRI scan suggested some new tumour growth was pressing on my spinal canal, making it thinner/narrower. The radiologists suggested I see a spinal surgeon with a view to sorting out what should happen next. So, I had a more detailed MRI of the spine yesterday, then this morning discussed the “pictures” with the surgeon who removed a bit of my spine last year. The upshot is that the new tumour/growth will have to be removed and some screws put into the spine. I’ve got a PET scan on Monday to determine if a couple of vertebra around the new tumour growth are “active” (it looks like it will be a PSMA scan but they are not sure yet). If they are active, the surgeon will take those out too. Obviously this was not what I’d expected or hoped for, and I’m dreading the after-effects of another operation. But, there is no plan B. This has to be sorted out before I get spinal cord compression. I know a cyclist who has had a similar operation, but, if anyone here has gone through it, I’d really like to know what to watch out for, things I should do before and after to help recovery etc. Apart from that, a number of people have asked to see a chart of my PSA through different treatment regimes. I’ve attached one below which cuts off the initial period of treatment - which saw my PSA dropping from around 400 to zero as the Zolodex and 2003 chemo kicks in - in order to make the variability in PSA since then easier to see I hope it helps. David. Link to comment Share on other sites More sharing options...
This topic is now archived and is closed to further replies.