Radium 223experiences and advice?

[SatuitMike]

Radium 223 Guidance - Can anyone provide any information on SEs while using this therapy?

[Tall_Allen]

It should do a very good job of pain relief, but sometimes there is an initial pain flare lasting 1-2 weeks. It seems to combine well with Provenge or Docetaxel, but not Zytiga or Xtandi (at least not without a bone-strengthening agent).

[HB1966]

I have received 4 cycles. Side effects were very minor for me. I drove myself to and from the treatment. The next day I went back to work. That was not a problem. From time to time I had some diarrhea. Otherwise, I had no noticeable side effects. Regards Theo

[Schwah in reply to HB1966]

Any results?

Schwah

[HB1966 in reply to Schwah]

PSA has doubled. A PSMA PET/CT and an FDG PET/CT were done. It was a mixed picture. Some metastases got smaller, others increased significantly. Stopped after the fourth (of planned six) treatments.

Pain had improved at least temporarily for 2-3 months.

[GP24 in reply to HB1966]

Why did you stop after four treatments?

[HB1966 in reply to GP24]

After four treatments, the PSA rose from 27 to over 60. A PSMA PET/CT and an FDG PET/CT were done for control. Some of the metastases have become smaller. But some have also grown very quickly. This was at the Homburg University Hospital and the doctor even suspected a neuroendocrine degeneration based on the FDG scan and recommended platinum-based chemo as soon as possible. Anyway, the XOFIGO treatment was then discontinued by the clinic.

With time distance considered - the treatment was 2019 - could have been done all 6 treatments. But it was just decided that way. The neuroendocrine degeneration was not confirmed. I am currently being treated with a study drug.

[Garbonzeaux]

No advice, but the radium isotope is 223. Accuracy is good when talking to doctors. Not 232 or 233.

[SatuitMike]

You are correct. I cannt shake it

[Magnus1964]

It's not as bad as I imagined. I tolerated it quite well. And the pain in my hip is gone. I now walk without a cane.

[SatuitMike in reply to Magnus1964]

Thanks.

[Hidden]

I recently did 6 sessions. It eliminated pain in the ribs and spine. However, my psa went from mid-30's to 150, then 300 within 6 weeks after completion, as well as the spread of mets as shown on bone scans.

[Danielgreer]

I’ve had two injections of Xofigo so far. I get fatigue for the first 10 days then it’s not so bad. It got rid of the pain in my hip, sternum and lower back and seem to have shrunk my tumors. I’m able to play golf now without pain. My PSA is on the rise though. It went from 0.376 to 1.3 after the first injection and from 1.3 to 1.9 after the second injection. Don’t know why my PSA is rising while the therapy seems to have shrunk my tumors. I’m hoping that my PSA will stabilize. I’m looking at the AMG 509 trial as a possible next step. Good luck!

[Danielgreer]

One addition piece of information: my ALP dropped from 583 to 245 from pre Xofigo to now, after my second injection. So I have that good news that offsets some of the bad news about my PSA

[Scoofer33]

I’m not a doctor or a pharmaceutical rep, so take what I say with a grain of salt, but I had six infusions of Xofigo in 2018 thanks to the generosity of Bayer Pharmaceuticals who gave it to me free of charge. BTW, in 2015 I was diagnosed Gleason 5+4=9 Stage IV prostate cancer with multiple painful mets to hips, pelvis, and spine. After 2 years of Lupron treatment I became castrate resistant even though my PSA was quite low. We decided to try Xofigo (Radium 223 dichloride).

It’s an amazing drug in the way it works! Unlike Radium 226, which killed its discoverer, Madame Curie, and has a radioactive half life of over a thousand years, 223 reaches its half life in 10.4 days. Being on the same periodic element row as Calcium, Radium 223 mimics Calcium in that it seeks out bone. Once there, it looks for the area of greatest cellular turnover (the cancer) and settles in. As it decays, it emits Beta rays.

Now, the way I recall it, X-rays are small and can only be stopped by something dense like lead. Alpha rays are a little bit larger and can be stopped by Aluminum foil. But Beta rays are larger, so much so that you can block them with a sheet of paper.

So, as Radium 223 decays it shoots off Beta rays that act as cannonballs destroying nearby double-stranded DNA strands, including cancerous DNA strands. The healthy strands can repair themselves, but not the cancerous ones. This acts to de-bulk the cancer lesions in the bones and removes some of the sources of pain.

Being chemo naive I did very well on the regimen and completed all six treatments. Others who’d had prior chemo - who began Xofigo at the same time as me - had a tougher time of it as their blood counts became too low to continue treatment. My PSA rose during this treatment, but only to 8 and that was soon taken right back down by Zytiga. I recall side effects being very minimal since I was already acquainted with fatigue and occasional hard and loose stools from other meds I was taking. Supposedly, I gained 3.8 months overall survival from the drug and that’s more time for loving my family and watching the grandkids grow!

Best wishes to you, SatuitMike!

[SatuitMike in reply to Scoofer33]

Thanks for the detailed response .

[j-o-h-n in reply to Scoofer33]

Thank you for your informative post. Spoil those grandkids..... Best wishes to all of you...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/09/2021 10:46 PM EST

[Scoofer33 in reply to j-o-h-n]

I’m sure the girls will be glad to hear of your “spoil” command to me, j-o-h-n! Thank you for being this sites good humor man! It’s a blessing to us all!

[SatuitMike]

Great response. I have a 2 pm tomorrow with the DFCI Oncology Team. Will keep you posted.