cRPC

User

Posted 23 Jul 2015 at 23:43

Hi All
Diagnosed in July 2014 with Metastatic Prostate Cancer PSA 1400. Age 56. Treated with ADT was successful in reducing PSA to 0.20 by Feb 2015. Since then I have become castration resistant and PSA has risen to 11. About to undergo Radium 223/XOFIGO treatment and would like to know other people experience with this medication. Pain level is very high and monthly ADT has been torture but something I have tried to endure. Any advise would be appreciated.
Thanks
Miles

User

Posted 24 Jul 2015 at 10:03

Hello Miles and welcome.
We appear to have been having a blip with the site which may explain why there has been a delay in your post appearing (also I think the first post has to be moderated?)

Anyway, you are here now and I am bumping your post so that somebody may see it.

I cannot help as I have no knowledge of this route but I do know there are a number of people on here who have.

Hang on a little bit and somebody will be with you I'm sure.

We can't control the winds - but we can adjust our sails

User

Posted 24 Jul 2015 at 11:38

Thanks for your help. It's nice to be here and know there are others who I can talk to about this. It's a hard slog dealing with this alone.

User

Posted 24 Jul 2015 at 12:02

Well, you aren't alone any more!!

I know there are men on here with metastatic cancer who will talk to you. There are also other halves on here whose men have been through the same and they often have helpful advice.

You will get replies but the site is maybe a little slow at the moment.

We can't control the winds - but we can adjust our sails

User

Posted 24 Jul 2015 at 12:29

Originally Posted by: Online Community Member

About to undergo Radium 223/XOFIGO treatment and would like to know other people experience with this medication. Pain level is very high and monthly ADT has been torture but something I have tried to endure.

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

User

Posted 24 Jul 2015 at 13:24

Hi:
I am being treated with monthly injections of Lupron (leuprolide acetate) which is the equivalent of Zoldex and daily oral medication Casodex (Bicalutamide). Both are designed as ADT for testoterone suppression. The side effects have been fairly severe with constant hot and cold flushes and body aches to go along with the constant bone pain. Pain medication only works partially and has its own unpleasant side effects. Unfortunately my cancer has now become castration resistant and ADT is no longer working. My PSA has doubled each of the last 5 months and hence the decision to go down the Xofigo/Radium 223 route. Can only do this for 6 months and is palliative not curative. After that it is probably Chemo and then who knows?

Thanks for taking the time to chat, it helps a lot.
Miles

User

Posted 24 Jul 2015 at 14:05

Originally Posted by: Online Community Member

Thanks for taking the time to chat, it helps a lot.

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

User

Posted 24 Jul 2015 at 14:15

Thanks:

Read your profile, you are right that our cases compare other than the amount of bone metastasis. Bone scans revealed spread to spine, hips, scapulae, long bones and cranium, subsequent spread has slowed but continued. Other drugs in the mix to be considered are Abiraterone Acetate and Enzalutamide.

Thanks again
Miles

User

Posted 24 Jul 2015 at 16:18

Hi

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

User

Posted 24 Jul 2015 at 16:32

Hi Martin:
Thanks for your comments, they are very helpful. I start the treatment next week and hopefully I will have no side effects. If it helps with the pain for a while that will be great. It will be nice if I can be off the pain meds even for a short time.

Thanks again and good luck to you.
Miles

User

Posted 24 Jul 2015 at 17:19

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

User

Posted 24 Jul 2015 at 17:44

Hi Martin:
When I was first diagnosed last year I had external radiation on my back and ribs for 3 weeks. This helped the pain, however, it subsequently has returned. Have not discussed a second round of external radiation but I think my oncologist believes that Radium 223 is a better option at this stage.

Thanks again.
Miles

User

Posted 24 Jul 2015 at 20:16

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)

NEVER LAUGH AT A LIVE DRAGON

User

Posted 24 Jul 2015 at 20:56

If you have already had one radiation blast then I would agree, hold the second until after the RA223. The RA223 should reduce the bone pain for at least 6 months and you will still have the second radiation treatment up your sleeve.

I used the same logic and it seems to have worked.

We were able to go on a long holiday during the RA223 treatment, coming back to the UK for the treatment. It worked very well. Just a shame it can only be given for 6 months.

All the best
Martin

User

Posted 24 Jul 2015 at 21:48

Hi Julie:
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

User

Posted 31 Jul 2015 at 15:01

Started the Xofigo treatment this week. Actual procedure was not problem but the side effects are a bit discouraging as they are similar to those I experienced with external beam radiation; headache, nausea, body ache and no appetite. Hopefully these will ease up in a bit and I am excited to see if my pain level decreases. Trying to force myself to eat and hope my blood counts stay up as they were low to begin with and this treatment can exacerbate that problem.
I hope all you guys (and Gals👏😄) are keeping well and keep posting as it is vey therapeutic.
Miles

User

Posted 31 Jul 2015 at 16:30

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

We can't control the winds - but we can adjust our sails

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