I've been taking Xgeva since Nov 2017 for extensive bone mets. I had it monthly for the first few months, then every other month for about a year, now every three months. The total time I've been on it is about 33 months. Just wondering if anybody has heard about a limit on how long it is effective or can be taken. Since I'm down to 4x/year I'm hoping I can keep taking it for a while. I'll ask my oncologist next time, but wanted to hear from the frontline experts here too. Thanks so much!
Patty
Good question! I've been on Xgeva since Nov. 2016. I haven't been told that there is any limit to it, but who knows?!?!
I had it every month for 19 months, now i get one every 3 months, I guess is the normal!
Hi Patty
I’ve had xgeva every month since May 2018...it’s never been suggested that’s too long...I’m assuming with bone mets it would be a disadvantage to stop having them but someone else may know more than me
Barb xx
According to my Dentist 3 years...He was timid to give his opinion but I went in for a jaw issue so he caved....XGeva and Zometa for Osteoporosis are 2-3 year regiments. I’m not sure why they stop at 2 years and ours go on forever. There must be a reason why they decided to stop at 2 years. But good luck trying to extract that info from someone...😀
I finished up Year 4 here in July on Zometa. Every 3 months now.
It can cause jaw deterioration, that is one of the possible side effects.
I've been on Xgeva since the beginning of 2014. Monthly. Docs differ in their opinions to how often to give it, but for me, it's been working like a charm!
Interesting insight from my oncologist. She said there is no time limit on how long a person can take Xgeva, and the risk of fractures actually increases when patients stop suddenly. If for some reason we have to stop, they recommend starting on a different bisphosphonate. So for now I'll stay on my every 3 month regimen. Thanks for all the input!
I had "extensive" bone mets ever since I was first diagnosed, in March 2004, The risk of ONJ was not widely known then but presented at the San Antonio BC Symposium in Dec. of that year and protocols for Aredia and Zometa, the two IV biphosphonates available then, were changed. I forget the exact "schedule" recommended then, but it was a few specific months of monthly injections, then every two months and eventually spread out more. So....I was switched to every other month in 2005 and then at less intervals and was switched to Xgeva when it became FDA approved. I did have to take a break from it for 2 or 3 years due to something about my bones, but I am back on it now. Was getting it every four months and now every six months. My onc told me early on that those of us who have a life time history of regular dental care are less at risk for ONJ than those who haven't but I have not run across that anywhere else and several of the women I have known who have developed ONJ have always gotten good dental care. Osteonecrosis of the Jaw (ONJ) is usually (only?) in the lower jaw (mandible) and we should see our dentists asap if we get pain in our jaw that lasts over 3 days. I have had less mild bone pain with Xgeva than Zometa. I am allergic to the bisphosphonates and had to have just a half dose of it with premeds of hydrocortisone and benedryl and extra fluids and extra infusion time. That worked and prevented an allergic reaction for me. Now on Xgeva, which isn't a bisphosphonate, I don't need all that. What I have heard about these meds is that they both help bone mets heal and help prevent new bone mets. ONJ can sound scary but the women I have known who developed it managed well, not that it is anything we want but I sure wouldn't refuse these bone meds because of the possibility of ONJ. Progressing bone mets would be much worse than most ONJ.
Thanks for raising this question. I've been on Xgeva since Dec. 2015 and my onc. has shown no signs of wanting to change - I even asked about going to every three months and she said "nope." What I've heard about ONJ is that you are mostly susceptible to it if you are having surgery and on the drug - so there needs to be a big gap of time in front of significant dental work where you go off it and then a gap after the surgery.
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