I thought I’d do an update. Now that DH has been on enzalutamide for a few months and zoladex almost 4 months. He’s been quite tired on the drugs, he’s really slowed down on our dog walks, I used to struggle to keep up, but now we often have to stop for a rest. But he’s keeping up the walking, so that’s good. He’s been busy decorating too. The worst thing has been headaches, muzziness and sharp pains in the back of his head, the pains lasting only a few seconds each time, a couple of times a day, but still a bit worrying. At his nurse phone consultation she suggested stopping them for a week, that didn’t make any difference, after the week he was put on 3 tablets instead of 4. But still the same. The nurse did suggest trying a different drug, the one with the steroid, but dh says he doesn’t want steroids. But I’ve read if you are going to change drug, it has to be done in a certain time frame. So dh should probably think seriously about it. I have read enza is the better drug though.
Dh didn’t have any hot flushes at all just on zoladex, but does now they’ve added enza. I’ve been joking about with him, as he makes such a fuss, I said it’s a bit like man flu. I know they aren’t nice and I shouldn’t joke, but he started it by saying “when you used to get hot flushes” I still do get them regularly, I just don’t tell everyone, strip off and have to stop whatever I’m doing like him. I’m only messing about with him, of course his situation is a lot worse.
Dh had a diabetes and cholesterol test done recently as the drugs can cause diabetes and he was pre diabetic before, he is already on statins even though his cholesterol was never high, enza can stop the statins working. The blood sugar was high, well into the diabetes zone, but they said re test in 6 months and no treatment needed. Cholesterol was 5.01 which isn’t high, but the gp said to double the dose anyway. Not sure on the theory there.
PSA was less than 1.0 at the last test, he’s having it done again in a couple weeks, before the nurse consultation, plus other bloods to check he’s ok on the enza.
One thing…dh has had a bad back for years, it has got worse the last 2 or 3. Now he’s on HT his back has improved with little pain at all. I did have a thought that maybe he’d got mets in his spine, but surely they’d have been picked up on the psma scan, plus his back has been bad for such a long time it can’t be prostate cancer related as it would have been much worse after all this time. So no idea why the drugs are helping his back, but a good thing.
The last thing to add, the lack of libido. It is so strange, I’ve had 29 years of him driving me mad in that department. A week without and he’d get bad tempered and moody. So now doesn’t get moody, the lack of testosterone certainly makes a difference there. It still feels really odd, the thought of him never really wanting me is still hard to take, of course life is more important though. If he puts his mind to it, he can still “perform” so I guess that is a plus too. Zoladex alone had no effect on libido, but he was only on it for a couple of months before enza was added. Maybe it wasn’t long enough.
DH never had a face to face appointment with the consultant, that is a bit disappointing. Just the one phone call. Now he gets phone calls from the nurse. Next one end of Feb. I guess that’s all we will get as long as the drugs keep working.