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Posted 10/11/2013 8:41 PM (GMT -5)
Can anyone that has been given Xofigo share how it is administered -how often are the injections and are there any side effects you have felt after being given the drug?  Any special considerations to watch out for and be aware of? Do you have to limit your daily activities?  Is there extreme fatigue or other side effects? Trying to get some information and real world experiences from actual users vs. just reading the drug information online.

This may be the next thing my dad is prescribed after an initial prescription of Zytiga which worked initially but we are not sure now after just two months -PSA dropped from 60 to 20 but is now at 30.  He is feeling very good otherwise. 

Thanks for any information anyone can share.   

Posted 10/12/2013 8:24 AM (GMT -5)
CMA

As my signature indicates I haven't missed too many stops on the PCa trolley. Not sure where your dad is with respect to metastatic involvement but I assume with the introduction of Xofigo he must be experiencing bone lesions on some level and perhaps some degree of discomfort. I have had two monthly infusions to date and I can assure you that the delivery of the drug is painless. It's normally six monthly installments and I continue to work full time at 65 yrs with no side effects.
I'm one of those rarities that display very little PSA despite bone spread so monitoring the success of this drug will be a bit more complex but next month I will receive imaging that should offer more data on how well Xofigo is working out for me. This drug has shown a significant survival advantage in trials and given the fact that it triggers nearly no side effects it's hard to fathom a reason not to take advantage of the program.
Best of luck to you and your dad and feel free to query this forum for any further information.
Posted 10/12/2013 12:03 PM (GMT -5)
CMA...I just got my first injection alst month and get my second one next week. Pretty simple process really....they find a good vein and have a large syringe of saline solution I believe it is.....they get that started then stop...then they hook a small syringe of the radium 223 to the large one and pump it into you at the same time....The doctor must do the part with the radiaum......I had a team of 5-6 people in the room doing it.....some lady who has a radiation detector will wave it around the room while the process is going....then she took it and waved around my body to make sure it was spreading thru my veins. I also had another radiatin Onc there...not sure what his mission was other than stand there and ask me stupid questions. The whole process is fairly quick......and you must have bloodwork and weight checked 1 week before each of the 6 infusions. They have to make sure they give you the right dose and that your liver numbers are holding up OK.

My PSA was going down from Zytiga so Im not sure how I will guage my progress but I will ask that this week. They did ask me if my back pain was any better but didn't expect that after 1 infusion. I suspect I will be getting another bone scan after my injections.
Posted 10/13/2013 9:56 AM (GMT -5)
Thanks so much Casper319 and Oncas for your responses!  Greatly appreciate this information.   Each case is so unique -so hard to make sense of how everyone responds so differently to the medications.

Casper319- just curious why you are on Xofigo if your PSA was going down from Zytiga.  Are you taking both at the same time now or did you go off Zytiga?

Oncas -you do present a very interesting condition as you mentioned with a low PSA but bone mets.  This disease is so perplexing! 

Just to recap where my Dad is - he was initially diagnosed in 2001 and had RP in the Fall at that time.  I don't have the details on his gleason score and such, but cancer was supposedly confined to prostate, caught relatively "early" and removed.  He was treated with radiation after surgery and then on hormone therapy.  He enjoyed 10 years of remission (we never thought about recurrence), always went to the doctor, etc.  This past April during his PSA check -it was found at 16, scans revealed bone mets.  A Lupron shot was given, PSA went back to 12.  He did Provenge from late May-early July.  PSA rose to 60 during that time and back pain became pronounced after Provenge.  He started Zytiga/Prednisone in mid August.  First result after being on it after 2-3 weeks was PSA dropped from 60 to 20.  Most recent result showed a rise to 30.  Didn't think it would stop working so quickly but not sure if it is too early too tell.  He's going to MD Anderson later this week to see what they recommend.  Will have first scans done several months post Provenge so will be interesting to see what they look like. His back pain has improved considerably since starting on Zytiga -remains very active -not debilitating, etc.   His doctor in Chicago is suggesting Xofigo.

Posted 10/14/2013 11:59 AM (GMT -5)
CMA...I was told since the Zytiga and radium 223 attack in totally different ways that doing 2 treatments at once would be beneficial...My Uro and radiation docs both agreed as well as my Medical Onc....theres been studies going on with the use of simultaneous treatments and many are favorable.

Biggest thing is how each patient is able to tolerate treatments. I felt the same way at first because I didn't want to waste my options so quick.....
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