Information and Advice on XOFIGO

[taxman]

Would be most grateful for information and advice - benefits, side effects,etc. from anyone who has taken Xofigo. It is Radium and I am rather concerned because it is a radioactive substance. I was on Xtandi for 9 months with lots of side effects and then it stopped working- rising PSA and extreme pain on my bones. Had "spot" radiation to several areas of pain and it was miraculous. Pain gone! Doc decided to try Zytiga + dexamethason which worked for 5 months-PSA is now rising again and there is further spread in my bones. Doc wants to try Xofigo before Chemo. Any advice would be most appreciated.

[Cancer09]

Xofigo was my husbands last treatment .like you he tried Xtandi w terrible side effects ..Zytiga was the best yet his psa rose taxotere was ok .jevtana had side effects too..he had xofigo w two pain flares lasting a day or two meaning his pain was worse then ever needing more oral pain meds ..but after that passed his pain was almost gone .however it depleted his WBC RBc and platelets .he had multiple transfusions ....your hemoglobin must be 10 to start .he needed 2 transfusions prior to getting his first treatment .it did help his pain .it was a simple 1-2 minute injection . I Believe it worked it was just my husband was on the decline before he started it .radiation certainly helped the bone pain short term too...keep fighting

[chascri]

I finished six months of the Xofigo injections last October for multiple mets to T7-T11 vertebrae, multiple ribs, sternum and left femur. I got good pain relief about 6 weeks into treatment. I was able to go off Hydromorphone at that time. Minamal side effects, just a little more fatigue. PSA went down. Unfortunately , I had a fall January 21 and fractured two thoracic vertebrae. So I am back on the Hydromorphone for pain relief since then. No new mets identified since I finished Xofigo although my PSA has started to creep up reaching 3.3 last week. A summary of my treatments since diagnosis in 1999 is in my profile if you are interested.

[George79]

I am presently just passed my third session. No appreciable side effects. For the first week after the injection I wear disposable pads because the radiation is present in bodily fluids and my husband does the laundry...a minor inconvenience. My bone mets never gave me any pain and that has stayed the same. There is some minor fatigue, but I had that from Zytiga anyway. PSA 2, down slightly from start of treatment. Hope this helps.

[Reptale]

I'm about to take my fourth of six Xofigo treatments on Friday. Since my bone mets have so far been pain free and since my PSA has always been very low, I won't know until my next PET scan whether it is effective. BUT, I can speak to minimal side effects. For me it's some queasiness 2-4 days post injection accompanied by a day of the trots. During those few days I'm a little tired and inclined to take it easy, but the rest of the month is normal. As for radiation danger for those around you, as others have suggested, they just need to avoid contact with your poop and pee for a week. All in all, I think Xofigo is a lot less scary than it sounds.

[Caring7]

My husband took 4 of 6 Xofigo treatments. He has always had borderline anemia and the chemo dropped it below normal. It was coming up but Xofigo seemed to drop it again quite a bit. He had fatigue and just felt run down, and mostly worried about the low blood values. This is not a typical side effect but it's such a new treatment, there is not much documentation.

However -- he/we still feel that the Xofigo made a difference. He has a couple of significant bone mets in spine and pelvis, but he also had lots of "spreckles" (as I call them) of metastasis. Our theory for going with Xofigo was that it should hit all those little buggers (impossible to do spot radiation). He has not had any new metastatic areas (although recently - 18-20 months post-Xofigo - has had a spinal tumor expand).

There is also Provenge/immunotherapy if you are eligible for that.

Reading your post and comments here, I'm glad that my husband has done so well on Xtandi/enzalutamide (18 months pretty stable, although now starting to fail clinically). We are probably on to abiraterone/pred next, and then hoping something else is discovered because we've done everything else.

Best wishes for you and whatever decision you make.