I am hormone-resistant, failed Zytiga after 4 months with PSA up to 61, completed a CT/bone scan in mid January showing bone met progression with some pain, I am scheduled to begin xofgio (radium) next week.
I've read some posts here on it as well as others but feel this is my best option after checking relevant trials & chemo (Jevtana) as alternatives. Will remain on quarterly Lupron and will need to see if Oncolgist wants me to stay on XGeva quarterly.
I'll try and update my progress for any others in similar circumstance.
*Diagnosed Aug 14. Stage 4. Gleason largely 7's
*Chemo Oct 14- Jan 15
*local radiation pelvis Aug 16 ( eliminated pain)
* Zytiga Oct 16 - Jan 17 (increasing PSA).
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Jackrow
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Radium-223 / Xofigo can be effective in relieving bone pain all over the body. As I understand it, if metastasis to the bone is life threatening (it is for some patients), then the drug can also extend life. If a patient's most dangerous metastases are in soft tissue (lung, liver, heart, etc.), Xofigo won't treat that, but chemotherapy might help.
Jack what are you doing for pain?? My father is on 15mg of slow release hydromorphine twice daily with 2mg short term for breakthrough pain. Sometimes if he moves a certain way it hurts so bad he almost passes out and gets nauseas. I am wondering if he should be moving more or is there more to helps with pain.
C, burnett,First I have 20 years experience with severe chronic pain. Before upping meds, decide what is quality of life on thevmed? My dad couldn't handle he was flat and depressed just on low dose. As for movement, aquatic therapy I hear is best and if bone Mets with supervision of pt, but yes moving more helps raise serotonin and dopamine that the pain meds actually lower and they help deal with pain as well as depending on what and where create better mobility if done slowly. I spent a year on oxy. I lost all my muscle, and it seems the people with high quality of life on here, do exercise to their best ability. Be careful exercising while pain fully blocked by drugs as it can lead to injury because your body can't feel the pain of what is too much. See a physical therapist. Depending on the type of pain, ie nuetopathy thete are diff. Meds for pain, but a few things that truly help trigger point acupuncture, baths with epsom salt, braces on joints, cbt therapy, meditation, even if he just listensvto it in the background. Salon pas muscle pain. Radiation bone met pain. Tumeric helps refuce inflammation. Oddly benedtyl not advising take with oxy etc but it also helps with pain. Some anthistimines do. And a pet. A pet does help with pain. My best to you and dad
Thank you for the question. Currently I am in periodic pain not at levels or consistency I've experienced several times before. Therefore I am relying on ibuprofen and worry the pain will escalate anytime.
Back in the autumn, I was on 2 5mg Oxy and either 15 or 30mg slow release (sometimes both combined at night- 45 mg) morphine.
I had Radium 223 , 6 month course Jan - Jun 2016. Absolutely no side effects or discomfort or any interference to my lifestyle. Diagnosed in 2013 with PSA 620, I had widespread bone mets every where except my limbs. The mets were reduced significantly with Abiraterone and Zoladex and the Radium 223 then slightly reduced them further, but more importantly stopped any further increase.
Xofigo is an excellent drug and sounds like an excellent next treatment for you. You can also try Zytiga, however given your history with Xtandi it might not be effective. However, it is always worth a try.
Joel
Jack, you got shafted, my man.
Have you tried Xtandi yet? I would before going the radiology route. I'm seven months on Zytiga, and when it fails, I'll try the Xtandi. I also get Xgeva, but I get it every four weeks.
My uro wanted to put me on the Xofigo as soon as he heard mets. My onc on the other hand said no way, and put me on Xgeva. I don't have any pain from the mets, but that didn't matter with my uro. My theory is this, wait till the last thing stops working before you stick chemicals or radium in my vein.
I'm also curious if taking RA-223 and the Xgeva simultaneously would be a risk. I'm not a PHD, but I would certainly question it.
Talk to another oncologist about xofigo. try an oncologist at a medical institution. We went to vanderbilt university Ingram cancer center. Given XOFIGO immediately. Very similar symptoms as you
The point I'm trying to make is, is Xofigo is used for mets with pain, whereas Xgeva is used for mets without pain. This is my understanding of how they work anyway. It doesn't take a scientist to figure out that one is radioactive and the other is not. As long as I am pain free, and the mets are kept in check, no chemo or radium go in my veins. I'm settled now with my third oncologist, he's excellent.
I was put on Xgeva to help bone growth, or protection, I don't think it's specifically for the PCa. I was put on Zytiga when the Lupron failed, and my PSA went to 29. Now it's 1.1 I'm still on Lupron full time, Zytiga, and Xgeva. I have only had a 5mg prednisone daily. I thought Prednisone was to help with liver health, I may be wrong, can't say. Now I have to look into dexameth.
Ty for that info. It's very similar to my.dads, also diagnosed in august so cheers my friend. Let's beat this with knowledge science and nutrition. Healthy days and years ahead, Erica
My husband was on the radium 223, he was very sick for about 4-5 days about a week after each treatment (nausea, vomiting, pain, severe pain flares in different areas mostly hips and shoulders, fatigue). Then he would feel pretty good and it was time for the next treatment. After round 3, he had a bone scan and CT which showed increased progression of the bone mets and some new spots of mets in his lungs and lymph nodes, his PSA was up to 1300. It was a fail for my husband but I believe this is not typical for most men being treated with radium 223. Our oncologists were quite discouraged that he responded so poorly! As we were.
Please make sure your lab work is watched VERY closely as it can bring counts down very low-my husband never got low enough for transfusion but other men have and this med can also have an extreme affect on the bone marrow-rare but it can happen. My husband got a total of 4 radium 223 and then was switched over to zytiga/prednisone. He takes morphine ER 15mg three times a day and 15mg IR in between. Best wishes and I hope you have a much better response than we had.
Continued Zitiga/prednisone while taking xofigo(radium 223) a Little more fatigued is only side effect after 3 treatments. 4th due jan. 26th . Prayerfully hopeful for good results. Hope your husband will be responsive to Zitiga. Does he take zometa for bone strengthing. I do- once a month - along with Eligard injection monthly.
Yes he gets zometa and Lupron injections. He responded to xtandi for only 5 months so we are not real optimistic for the zytiga but hoping to buy some time to get an okay from the ins co for another plan the oncologist wants to try. Not sure what he wants to try, we were a little distraught the day we found out the radium 223 wasn't working and he was explaining the next options. We go back to the oncologist on Monday.
My husband is also on radium 223 and doesn't appear to be doing well. What new treatment did they put your husband on? I really hope that it has worked well for him!
I just watched a video of Dr Kwon of the Mayo Clinic presenting at a recent PCRI Conference. His focus was on reducing the cancer load by using C11 Pet Scan images to determine precisely where the Ca has metastasized to and then removing it by surgery or radiation. I accessed the video via AskDrBarken web site, but am sure you can access it directly on YouTube. His presentation in 2015 was on YouTube.
The video is also great encouragement to recurrent cancer patients.
Hi, Jack, thanks for your post. Based on my own experience I have high hopes for your Xofigo treatment. I had it last spring and recent studies show marked improvement in my bone mets. I did have the usual side effects from the treatment: diarrhea for a couple of days afterward accompanied by feeling queasy. No big deal compared to the amount of improvement. Hope you have a similarly positive experience. Please do keep us posted.
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