Back again after more bad news - advice

Hello Zoey (Zoey88) 

Thank you for coming back to us with your dad's update. As far as I can recall the only Community member I can remember on radium223 is Skoda so I have tagged him to this post - I think he's started in the last month or so.

I do hope this helps - I am sure some further information will follow later.

Best wishes - Brian.

Hi Brian, Zoey,

I've had two shots and the third is due on Friday. I'll try and update on effects as we go along.  Apart from a bit more pain which is likely just the disease, I'm quite happy with the lack of side effects. A little caution - when I had chemo, there were no SEs until after the third session, so I'm not counting my chickens.

Zoey, Hope it works out for your Dad and 20 is not that high after all.

Best wishes

Oh, should mention - during Radium the PSA measurements are meaningless as the dead cells give misleading counts. We'll have to wait 6 months to find out just what happened.

Thank you for replying. I’m quite surprised to learn how uncommon radium 223 is within the community. That’s helpful to know re psa. I think the worry about my dads psa bring 20 is it was only 22 at the point of diagnosis and before all treatment a year ago,

I’m pleased so far the radium 223 isn’t having too many side effects and hope it continues! I’ll look out for any updates thank you 

Good morning Zoey88 and sorry to hear of this latest development. I can't give any personal experience about Radium 223 apart to say that it is the go to treatment when multiple bone metastases are present. My husband wasn't on Darolutamide but was on Enzalutamide which is similar. In his case it kept the PSA down for a year+ but when it started to rise he was taken off it and chemotherapy recommended (hubby's chemotherapy only kept things in check for 5 months). It is quite normal to be taken off the second generation antiandrogens once the PSA starts to rise as they are no longer doing their job and it does feel as if a crutch is being taken away but staying on them can push the body into producing testosterone from other places like the adrenal glands and so can be counter productive. What treatments are offered and when is very much a judgement call by the oncologist taking into account the health of the patient, plus of course the wishes of that patient and how the cancer reacts to the different treatments. It can feel like you are on a never ending rollercoaster and eventually we will run out of options but for now your dad has to stay strong and positive.