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Miles - I can't help with your question about Radium 223, I haven't got there yet. However, I may be able to help with ADT. I have a 12 weekly Zoladex implant into my lower abdomen. I'm coming up to 2 years on Zoladex. Every implant has been a walk in the park apart from a little soreness on the day of the implant. What are they giving you? Is it worth asking for Zoladex?

Best wishes.

ColU

No problem, that's what we're here for.

I think I'm on a similar route through treatment to yourself. If you click on my name you will see my progression to date. I've been luckier than you, so far, re side effects. The flushes aren't too bad, I have little in the way of bone pain although the ADT is probably contributing to some joint soreness but nothing that needs pain medication.

Feel free to ask any questions of me and others on this forum.

ColU

I had RA223 from Jan to June 2015, after docetaxel and enzalutamide had failed and bone pain was increasing.

Monthly injections of RA223 were no problem. Main side effect was fatigue which may have also been a carry over from the chemo.

Was effective in causing ALP level to drop to normal range. Alkaline Phosphatase, which is measure of bone cancer activity.

PSA rose during treatment as this focuses on ALP and bone pain which were significant.

Bone pain in hips and back reduced, I had also had external radiotherapy on both hips in November and December. The combination of RA223 and radiotherapy worked well.

Stopped after max of 6 months to avoid damage to bone marrow.

One month after last RA223 bone pain returned with vengeance and took several weeks to get back under control with move to morphine based pain control, steroids and more external radiotherapy. ALP has gone back up to 230 but PSA has dropped from 280 to 215 following introduction of libestrol.

RA223 was always a palliative treatment and it worked well whilst taking it. Who knows what ALP and pain would have been like without it.

Happy to answer any questions you may have.

All the best

Martin

Hi

I hope it goes well for you, hopefully you will get at least 6 months with much reduced pain meds. Soon after starting the RA223 and after the external radiotherapy I was taking far fewer pain killers and soon down to ibuprofen and co-codamol just twice a day.

I have hot flushes from ADT but no significant body aches I am aware of, the bone pain has been the main problem.

Have you spoken to anyone about external radiotherapy for the bone pain alongside the RA223? It is a one off treatment and you can have two on the same area. It worked well for me to reduce the bone pain.

All the best
Martin

Hi Miles,

I just wanted to say Hello and welcome to the forum I see you are in the little BOB. Band of Brothers or the met club as we sometimes refer to it. I am Trevor's better half and it is always me that posts. I see you are having a tough time, Trevor has been on the same meds as you and our next stop will be Abbi. Chemo is not on the table for us because Trevor has heart issues , I am hoping that Si Ness will pop up for you as he may be heading for Radium 223 .

Stay strong and keep posting weird to say but we even have a giggle some times on here.

BFN

Julie X

ps if you click on avatars you will be able to see everyone's profiles (take no notice of mine that was a veeeeeeeeeeeery long time ago)

Thanks for the encouragement, as you know it is tough to deal with this disease and while I won't say I am happy to join the Band of Brothers, I will say I am proud. I read Trevor's profile and see that he has had a very tough go of it. I understand the pain situation as I had to be admitted due extreme pain which stopped me from being able to walk etc. It is disappointing that my cancer has become castration resistant and while I knew this was likely, I had hoped for more than a few months but there we go! So now it is off to the Radium 223 which I understand works well if only for a limited time. Just so you know I live in Dallas but am a Brit from the Isle of Wight. Have lived here for 35 years. Some of the drug names may differ but they are essentially the same.

Anyway thanks for your kind words and I hope Trevor continues his dogged fight for a long time to come, he is inspirational.

Miles

Hello again Miles.
Sorry to hear you've been through the mill with the treatment's side effects.
I sincerely hope they give you some relief and I am keeping my fingers crossed for you.
It's difficult to eat when you don't feel like it.
Are you able to obtain or take Ensure or the American equivalent? On days when food is a real nuisance the Ensures will give you all the nutrients you need in a drink.

Good luck to you for the coming days in the hopes that pain is greatly reduced for you
Sandra

Thanks for the words of encouragement it definitely helps. I am sure things will improve it will just take a bit of time.

Miles

As I have only just started XOFIGO I have not been back to the oncologist or my GP. I will see them both next week so if the situation has not improved I will talk to them about possible solutions.

Thanks for your advise.

Miles