Xofigo

[Wileyl]

Has anyone done radium 223 (xofigo) and if so what were your experiences?

[YostConner]

I had loss of appetite, nausea and vomiting, but I think it was worth it.

[Caring7]

My husband did it. He stopped at 4 i think because it generally made him feel bad, probably dropped his blood counts (which are low even in normal situations). I can't remember exactly. BUT - it really seemed to make a difference with the bone mets. He had a lot of "spreckles" (my technical term for it) -- small spots in some areas, in addition to the bigger obvious tumors. It's hard to know exactly but anecdotally, his bone mets seems to retract a bit and he had fewer new tumors springing up.

We were surprised that there is not a lot of info out there (other than from the drug company and the clinical trials) about it, so it's hard to get a sense of what might happen. Try it and be honest with yourself and your doctors about how it's going. The docs with my husband agreed that 4 of the 6 would still have an effect. Six was only a "magic number" because that's what they did on the trials (we were told by our research oncologist).

Good luck.

[Jashelby]

I did 5 of 6 treatments of Xofigo. Had to stop because needed to change treatment to get to the cancer cells that moved into my lymph system. As far as side effects.....lots of fatigue. Didn’t have nausea/vomiting. Getting the treatment was a cakewalk, got a little fluid, the radiologist comes in and pushes the medication into your IV and then you get the rest of the fluids and you’re out of there. Best of luck to you.

[blindsided]

I finished my 6th Xofigo infusion about 8 weeks ago. The primary side effect was diarrhea and low blood counts. I'm going in for a blood transfusion tomorrow.....

[Bookluv]

My father got very sick after just one treatment , low blood counts and unbelievable fatigue. He ended up in the hospital. He’s much more comfortable and doing better on hospice. Think very hard before doing this.

[George79]

Guess I was lucky. No appreciable side effects beyond fatigue I was already experiencing. Bone Mets we’re stopped. All in all a great experience

[abmicro]

I had no side effects at all, but I did not have a lot of bone mets either. I think my oncologist decided to start it based on a CT scan showing bone destruction on a pelvic bone that was previously radiated. I probably should have waited until I had more mets, or waited until after I did chemo, because you can only get this drug approved once, and then medicare will not pay for any more. It slowed down my progression. Once I finished all 6, my PSA ran started to run amuck.

[Rmanns]

l did 3 rounds. My PSA shot up l had no pain relief but did have nausea and weight loss.

[JanJames]

My husband had R223 in early 2017. He was scheduled to have 6 but oncologist stopped it after 5 because he fractured a vertebrae due to osteoporosis. he coped really well for 4 treatments we even managed a trip to the US (this had to be arranged in between infusions as he would have set the alarms at JFK because patients are radio active for a few days after treatment). He developed unpleasant side effects after the 5th so he was quite happy to stop at that. His appetite remained good and his bloods were fine. It worked well for about a year but he now has several bone mets again.