Xofigo (Radium-223)

[MeliaQuinn]

Just wondering how many men have had Xofigo and if it worked for them. And if it worked, for how long? Our radiation oncologist has recommended this as our next step (as has Tall Allen). Wondering about side effects also - thanks!

[Fairwind]

If you can't get into the "Vision" Lu-177 trial, then R-223 is an excellent second choice...What is his PSA now and what was his Gleason score.??

[MeliaQuinn in reply to Fairwind]

Hi, He had a Gleason score of 7 when he was diagnosed 2 years ago. We will find out what his current PSA is this afternoon. We met with the radiation oncologist yesterday and he said my husband has Mets all over his cranium (as well as spine, ribs, shoulder, etc.). He recommended Xofigo and said he would call our oncologist to discuss. My husband has no visceral Mets except some pelvic lymph nodes. Do you think LU-177 is better than Xofigo? Some people have posted that if he starts Xofigo it might disqualify him from the clinical trials. Thanks!

[MeliaQuinn in reply to Fairwind]

Hi Fairwind, My husband's PSA came back yesterday at 65 (up from 48 two weeks ago). Doc at Anschutz (University of Colorado) is suggesting a combo of Docetaxel and Carboplatin. Docetaxel doesn't seem to really be working anymore so we question whether the combo will work. Doc at Anschutz is worried about Xofigo causing damage to bone marrow production that won't recover. Unfortunatley, we are pretty sure the LU-177 trial in Denver is full. I know it is offered elsewhere but don't know what that means in terms of what insurance would cover, etc. Thanks!

[JLS1 in reply to MeliaQuinn]

"Doc at Anschutz is worried about Xofigo causing damage to bone marrow production that won't recover" -

My husband just had his 4th Xofigo treatment, and I'm praying this isn't what happened. His numbers suddenly plummeted and he's needed transfusions. What did your Dr say - can the marrow ever recover? Maybe it's just an extremely slow process ?? -or is it once the Xofigo causes bone marrow to 'crash', then he'll be dependent on transfusions for the rest of his life? I wonder if a stem cell or bone marrow transplant is possible?

[MeliaQuinn in reply to JLS1]

I really don’t know. In my husband’s case the bone marrow/dura mater around the brain appears to be where the bone Mets infiltrated.

[MontyB]

I had three cycles of Xofigo last year...June, July, and August. Scans showed that it was not working for me so I received only three cycles. The only side effect I remember is having slightly more bone pain for a week or so after each infusion.

Take Care, Monty

[MeliaQuinn in reply to MontyB]

Thanks MontyB - what have you done since?

[MontyB in reply to MeliaQuinn]

I wouldn't hesitate to recommend Xofigo for consideration even though it didn't work for me as I believe I am one of the unlucky few for which it is not an effective treatment for bone mets.

Since Xofigo I was in "A Phase 1b-2 Study of Niraparib Combination Therapies for the Treatment of Metastatic Castration-Resistant Prostate Cancer" clinical trial. The trial drugs did not work for me so I dropped out of the trial. Following the trial I tried a Carboplatin and Cabazitaxel combo. This combo did not work for me. I'm currently on Xtandi which seems to be working although Zytiga had stopped working for me.

Take Care, Monty

[MeliaQuinn in reply to MontyB]

Wow, I really hope the xtandi continues to work for you!

[MontyB in reply to MeliaQuinn]

Thank you!

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

I too wish Xtandi does the trick for you...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/02/2019 6:15 PM DST

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

Thank you j-o-h-n!

Take Care,

Monty

[JLS1 in reply to MeliaQuinn]

That's great! I hope it continues to work for a long time.

[EdBar]

Just keep in mind that Xofigo could disqualify you from using Lutetium in the future. Check with your doc about this. Dr. Sartor explained this to me during a recent visit. It’s a tough call to make.

Ed

[MeliaQuinn in reply to EdBar]

Thanks EdBar - that is an important consideration!

[monte1111 in reply to EdBar]

Ouch.

[Saydeebugz]

My husband completed 6 rounds of Raidum 223, after 10 rounds of Jevtana. His side effects were the bone pain and fatigue. His last treatment was 7 months ago, he has been in remission since treatment completion. Wishing you/your the best, stand strong and stay the course...

[MeliaQuinn in reply to Saydeebugz]

Thank you - that’s great that he is doing so well! Is he on any other treatments right now?

[Saydeebugz]

No, he is off of all treatments. He spent last 1.5yrs on Zytiga, Prednisone, Lupron, Jevtana, Radium 223 (as well as a hospital stay w/penomia). With all that behind him he is now focusing on rebuilding stamina, weight loss and hoping testosterone come back naturally. As horrible as this crap is, this monster CAN be beat so keep fighting!!

[MeliaQuinn in reply to Saydeebugz]

I am very happy for you and your husband. Do you still do monthly PSA tests?

[Saydeebugz]

Yes, blood work is done every 3 months right now, his PSA has been holding at 0.01 for about a year now

[MeliaQuinn in reply to Saydeebugz]

That is fantastic!!! Enjoy life!!!