Radium 223 and external beam radiation

[MeliaQuinn]

Wondering if anyone out there had external beam radiation to bone mets while on Radium 223? My husband had his first Radium 223 infusion this past Wednesday but he has a bone met in his spine that is causing severe pain. When we asked our oncologist if he could get it radiated, he said no due to high toxicity. I am also wondering for those of you who had Radium 223 that did get pain relief, how long it took. Did it happen right away, did it continually improve with each infusion? Thanks so much!

[HB1966]

Hi,

one week after starting with XOFIGO, the pain has improved for me. In April, I had left hip radiation. Also, it took one week until the pain has improved.

Regards Theo

[MeliaQuinn in reply to HB1966]

Thank you! Did you have the hip radiation while you were undergoing Radium 223?

[HB1966 in reply to MeliaQuinn]

I had the hip radiation in april. In august I started with Xofigo.

[Tall_Allen]

There is sometimes a pain flare with radiation of any kind - it feels worse before it feels better.

[MeliaQuinn in reply to Tall_Allen]

Thanks Tall Allen!

[Fairwind]

When discussing radiation treatment, be sure you are talking to a Radiation Oncologist and not a Urologist or Medical Oncologist.. Todays radiation treatments are a far cry from what they were 10 years ago.. Talk to an RO that performs SBRT or Cyberknife. Very effective, low toxicity..

[MeliaQuinn in reply to Fairwind]

Thanks Fairwind! We do have a radiation oncologist that has performed many treatments for my husband. We talked to our oncologist this morning who said he would leave the decision up to the radiation oncologist so we should know more soon.

[Rexwayne]

Well I did both at the same time. I had a little pain but I also have good meds to deal with the pain. The worse part for me was my bowles. Now three months out of everything I feel pretty good. My PSA hit a all time high at 73 but it started coming down and was at 28 last month. So it appears to be still going down. As far as pain it goes away eventually. At least it did for me.

FYI

I just read an article that they had a trail on repeating the RU 223 treatment on some patients. There is some promising results. Some have no detectable PSA. Around 50% are responding well to the treatment.Some could not finish it and I believe 1 or 2 died but it is promising.

Remember we are all different so we all have different results with our treatments.

[MeliaQuinn in reply to Rexwayne]

Thanks! My husband has a large tumor burden to spine, ribs, and calvarium (skull).

Zytiga worked for one year, then 8 cycles of Docetaxel. Within 2 months, the beast came back , a couple more cycles of Docetaxel until it quit working. Short stint on Xtandi before starting Xofigo. So far he has had only one infusion of Xofigo (last Wednesday). He has been in immense pain with a spinal met despite a heavy load of pain meds. Hoping that we can get the pain under control. He actually seemed a bit better yesterday and today - fingers crossed! My best to you and all of the people dealing with this disease!

[Rexwayne in reply to MeliaQuinn]

The trial is closed but if they offer RU 223 talk to your doctor.

I will see what I can find.

[MeliaQuinn in reply to Rexwayne]

Could you post the link for the trial. I come up empty handed when googling it! Thanks!

[Nutters85]

I had to wait a month after I had external radiation to my 8th rib before they would start my Xofigo as it does not work for soft tissue mets. I have had 2 treatments of xofigo and had to skip this month due to low blood numbers. I don’t know if I will be able to resume the treatments.

[MeliaQuinn in reply to Nutters85]

Thanks! Have they mentioned anyway to help bring your blood counts back up? We may be in for the same scenario soon. Some here have said iron injections/supplements, etc. may help, I’m still unclear as to what they can do to help with the blood counts being low?

[Nutters85 in reply to MeliaQuinn]

I have had 4 units of blood over the past couple weeks. I go in on thurs to see if it came back up. Have not had Iron. Have been having hydration issues also. I was dx 4.5 years ago with PSA 643 extensive bone mets. Started with lupron and casodex and did 6 rounds of taxotere. PSA got down to .16 before it started back up. About a year. Switched from casodex to Zytiga and still got 6 month lupron. That lasted about 1.5 years. Switched to Xtandi After PSA climbed 80 and got ok response for a year as PSA steadily dropped into the 20s. That is when it climbed pretty quickly and I was deciding chemo or xofigo. It took a bit to get approved for xofigo plus had the soft tumor on the rib.

[Nutters85 in reply to Nutters85]

I am going through some extreme fatigue and pain from the Xtandi. I have lost so much musculature in the past 4 months I cannot walk around the house without being out of breath. Joint pain is terrible. They said I was a good candidate for the xofigo and I chose my treatment. I am just second guessing as it took so long for me to start xofigo, maybe should have done chemo and started killing cancer earlier.

[MeliaQuinn in reply to Nutters85]

Sorry about your pain, my husband has also questioned the waiting to begin treatments. Some of his has had to do with waiting for clinical trials that did not happen. You said soft tissue on rib? Am I confused? I thought Mets on bone were not soft tissue. Thought soft tissue or visceral Mets were in organs such as liver, lung, etc. ? Please keep us updated on your treatments and I am hopeful that Xofigo will work for you!

[Nutters85 in reply to MeliaQuinn]

It was the size of a cherry tomato and they wanted to beam it first. Yes you are correct in organs. I also had a couple of very painful hotspots on my left shoulder they did for quicker pain relief. It is starting to be difficult to remember treatments and order of them. Will keep advised if I get my next xofigo. Thank you.

[MeliaQuinn]

Please let us know how it goes. I believe this site is important because we can talk to each other about our experiences. Oncologists, as wonderful as they are, cannot communicate to us all of their patients personal experiences. They don’t have time, etc. They give us statistical information that can be helpful but unhelpful as well! Stay strong!

[Rexwayne]

Prostatecancerinfolink.net

[MeliaQuinn in reply to Rexwayne]

Thank you!