Here we go - HT, RT and poss Abiraterome

Thanks, Adrian. It’s really useful knowing the good and the bad so we’re not blindsided, and are cautious with plans until we see how he gets on. This forum is amazing. 

Thanks for clarification Kazzy, that transforms things.  Rather than the NHS (I assume it's the NHS) giving your husband  less than me, he's getting more!

I have PCa, originally Gleason 4+3=7, spread to a couple of pelvic lymph nodes.  I'm on HT (6 monthly injections after bicalutamide tablets) pre radiotherapy.  I've asked whether they plan to add abiraterone, but the Onco consultant says no funding for it.  This is at a central London teaching hospital.

Where are you?   (Roughly where.  I gather we're not meant to name doctors & hospitals on here.)     I'm wondering what extra treatment I could get, or where I could go,  to improve my chances of long term cancer-free survival, which are no better than 50/50 on current plans I'm told.

 (Thanks to Adrian also btw.)

We’re in Scotland. I read somewhere that England don’t fund Abiraterone for early cancer treatment, but Scotland and Wales do. We’ve not been told the chances of long term cancer-free survival but I suppose at Gleason 9 (4+5) my husband’s chances would be lower than yours. Maybe that’s why he’s being offered it?? 🤷🏻‍♀️. It must be frustrating for you nonetheless. Having said that, we’ve not yet got our head around the extent of additional side effects it would cause, to inform a decision on whether or not to go with it. 

Derek, you have no idea how happy that makes me feel! 🥳. I know from your other posts how hard it was for you, so to hear how incredibly well you’re doing now is amazing. If my husband does struggle with HT (given that he’s prone to depression anyway and has been on antidepressants for a few years, it does seem likely to be an issue) it’s hugely reassuring to know that there really will be light at the end of the tunnel. In the meantime I’ll just have to cross my fingers he’s not hit too hard with side-effects, and encourage him to work on his muscle strength in the meantime. 

Good luck with the PSA results. Let us know how you get on! 🍀🤞🏻🍀🤞🏻🍀

In addition to the Zoladex I had abiraterone and enzalutimide with prednisolone for 2 yrs on a trial.

I seemed to suffer many side effects of the ADT but I did expect side effects and I am fairly laid back as a rule. You mention depression and I certainly suffered from that tho not previously prone to it. Again I was expecting it and got Prozac from gp and that made a big difference but sounds like you'll know about that.

As I say side effects from ADT are a real nuisance but a means to an end as faras I was concerned. The effects of RT not as numerous, affected my bowels for a while after, embarrassingly on a few occasions. Immodium does help. I was fortunate in that I live 2 motorway junctions from the treatment centre so no great panic with toilet issues which does/can happen.

Currently, the treatment has done what it was supposed to do, all good, no nasty lasting effects. Though obviously the cancer can come back in future, we all know that.

Peter

Years ago, the NHS implemented a rule that you couldn't mix NHS and private treatment, but it massively backfired with loads of private patients moving back into the NHS because otherwise they'd lose access to any related treatment when/if their private treatment expired. This is a double whammy because not only was the NHS flooded with procedures it wasn't expecting, it also lost the income from the private procedures it does which are to fund the public services. This caused a rapid about-turn such that the NHS is now required to work cooperatively with private procedures patients want done and to share test results, etc.

Having said that, adding Abiraterone privately hasn't been easy. The drug may be much cheaper than it was (but it's still expensive by the standards of most drugs). However, patients are finding they need a private consultant to prescribe it, and monitor it closely with frequent blood tests and reviews, and that's far from cheap. One patient I was talking with thinks this is costing him over £1000/month to start with when it requires very close monitoring.

Hi Kazzy, 

The problem is Kazzy that everyone is different. Bicalutamide didn’t affect me other than to take my libido away😟 My first side effect other than that was hot flushes. And dont be fooled if hubby has a warm feeling at first and thinks ‘what’s all the fuss about?’…..it’s just a sign of what’s to come.

very soon after my first jab, I developed serious anxiety and couldn’t function. My GP prescribed sertraline for this and it has made a huge difference, although it did take a few weeks to get into my system. I’m still on it and have no intention of coming off it until my testosterone returns and my PSA stays low. We’ve got enough to deal with getting through this treatment.

The other serious side effect,  joint ache, started for me about 9 months into HT and gradually got worse.

Of course he might be lucky (and I’ll keep my fingers crossed🤞) and not get many side effects.

I would speak to your CNS just in case he’s had some kind of bad reaction to the jab.

Derek