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Xofigo or not???

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Posted 5/27/2017 2:58 AM (GMT 0)
I am looking for a few opinions on Xofigo, the radium injection for cancer that has spread to the bones.

I had a psa test in September 2016 my psa was 7 in January it jumped to 13 then jumped to 20 most recent test last week. I thought and hoped it would drop with being on zytiga since 2/2017, (I could not handle the xtandi se constant fatigue big time) along with lupron injections since 2/2014, had lupron 2/2017 and will have another next week. Met with euro last week and he was concerned psa jumped again. He has started paperwork for xofigo and I will meet with oncologist that will do infusion to go over the process soon. My bones especially occipital bone (back of skull) I have from dull to strong headache. Pelvis at femur hurts as does points of spine and ribs. Oxy does take off the edge pain so I can sleep. Euro also asked about infusion chemo and Iam one of the guys that has said No thank you to infusion chemo. So if you have been infused with xofigo please let me know your thoughts and results. Thanks much.
Posted 5/29/2017 2:45 AM (GMT 0)
Ok Iam kind of at a lose here. I know I have seen some signatures with xofigo is there anyone here that has taken this radium infusion? If so please let me know your thought about this drugs.
I truly would appreciate some thoughts please.
Thanks much
Tom
Posted 5/29/2017 2:17 PM (GMT 0)
Your Urologist should not be your lead doctor anymore..A Medical Oncologist should take over now..A Radiation Oncologist will probably be the one who administers the Xofigo..Also, an RO might be able to zap the worst of the bone mets using SBRT and stop the bone pain....
Posted 5/29/2017 7:46 PM (GMT 0)
fairwind,
Thanks for the reply. I do realize an RO will need to infuse. I wanted to know if anyone had experience with xofigo. I have another lupron next week and I with my wife have a good talk with urologist. Bone pain is not all that bad I guess I say here the word yet.
Posted 5/29/2017 8:26 PM (GMT 0)
In order for your insurance to cover SBRT to treat bone mets, there has to be a lot of pain...It depends on how many bone mets you have to deal with, especially the ones in your spine..You don't want your spinal column to collapse rendering you bedridden...

http://www.curetoday.com/articles/rethinking-xofigo-drugs-benefits-go-beyond-pain-palliation-in-prostate-cancer
Posted 5/30/2017 2:37 AM (GMT 0)
My husband had the xofigo injections. The injections did not help much in his case-but my husband is one of he I fortunate ones who has not responded well to any of he treatment options. I have heard other have had great results with this drug. Always ask about your lab results to be sure those are being monitored very closely as it can adversely affect your bone marrow and blood cell production. Charlie had bone scan and CT half way thru the treatments which showed increased spread of disease so the injections were stopped after the 4th injection. He was very fatigued, nauseated and had increased pain in his bones for several days following the injection. He has had two blood transfusions for very low hemoglobin. I apologize that I cannot share a more encouraging experience. I wish you well.
Posted 5/30/2017 12:45 PM (GMT 0)
Neil79,
Thank you for your reply. Some drugs work for some and not for others. I am sorry he went through his issues with xofigo. Its almost like a crap shoot. You just keep on trying to find what works for you. I read about xofigo and not sure I will go that way. I dont need anymore fatigue for sure.
I know the docs mean well but geeeee try this or try that oh wait try this. Sorry just vent a little. I hope and pray you and Charlie find something that works. My big thing is natural stuff. Obviously cut out the fun stuff, white sugar and such I drink a super nutritional drink that helps clean my blood and immune system. Its all about the blood and immune system, like never changing the oil and filters on your Mercedes. It will one day break down. Most guys here have taken infusion chemo Iam one that has refused it 4 times. I will never criticize anyone for what they are trying to do to stay alive and have quality of life. Back at you with wish and pray you well.
Posted 6/1/2017 2:40 AM (GMT 0)
I have not personally been on Xofigo, but I did attend a company briefing on it last year, and also attended a Session on it at the 2016 PCRI Conference in Los Angeles. The FDA prescribing guidelines will not recommend it if one already has very large lymph nodes, or, visceral disease, such as in the liver and lungs.

Here's a link to the kinds of things your doctor / administering radiologist are being influenced by as they consider sending you down the road toward Xofigo.

https://hcp.xofigo-us.com/prescribe-xofigo/overview/

Charles
Posted 6/1/2017 4:03 AM (GMT 0)
https://hcp.xofigo-us.com/prescribe-xofigo/overview/,

http://www.curetoday.com/articles/rethinking-xofigo-drugs-benefits-go-beyond-pain-palliation-in-prostate-cancer

Thomas john, I turned those links into clickable links! no problem, thanks for those Fairwind and Charles.
For xofigo info, just go to the search box, located on the forum page at the very top, just under "Forums and Chat" and type into the search box the term"xofigo"then press the rectangular button. There will be a whole list of those with xofigo experiences. I will most probably ask for that treatment some day. I agree with the advice to ditch the urologist and find a competent Oncologist, that should greatly benefit your treatment. As always Keep the Faith brother.
I know how you feel about infusion, but just consider that Taxotere has helped many. Probably hundreds went through trials to prove it's effectiveness. My friend has had 9 treatments, yes some definite side effects but he still is working every day!
As always just Keep the Faith Brother, we are all in this battle together!
Wings
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