Initially when I was diagnosed with metastatic lobular breast cancer, I had Xgeva injections every 4 weeks. I had many, many, many sites on my bones! Three months after the initial diagnosis, I had NED. Seven and one-half years later, I still have NED on pet-ct scans every six months and my medication remains the same—Ibrance and letrozole. However, I now have Xgeva injections every six months.
I am curious to know if others have had a reduction in Xgeva. Thanks!
yes, me! I started in 2015 with injections every 4 weeks. Then it went to 8 weeks and now it’s 12 weeks. I’m not NED and never have been but I only have bone Mets. I’ve had no problems that I’m aware of and I have had a couple of heavy falls onto concrete and nothing broke. Originally my oncologist said that it’s efficacious for much longer than they give it so she wasn’t bothered about moving it out from 4 weeks to 8 weeks but they’ve resisted the idea of having it every six months although as I’m currently managing it myself I don’t necessarily have it every 12 weeks. This quarter it will probably be closer to 16 weeks than 12 weeks but I don’t think the preferred scheduling is set in stone.
Same as you!
After 5 years of Xgeva or Zometa my Oncologist said the risk of ONJ becomes too great to continue the Xgeva so I was weaned off over a year of Zometa every 3 months
I had the Zometa by IV every 3 months for seven years. I think it is wise to reduce the dose. It stays in your system a long time. It can be a contributor to ONJ. I am having issues with my jaw joint and my oral surgeon will be referring to the medical college for follow up for inflammation. You have to take precautions in dental work. My oncologist has taken me off of the Zometa forever. Thinking back maybe I should to asked to be cut back to every six months. I got a seven year run on Exemestane and Zometa. I would not suggest anyone not to take Zometa but have a discussion with oncologist about how much will be effective.
I think Xgeva is amazingly effective for bone mets. I was NEAD on it, also. I went from a "loading" dose of monthly to every three months. After a few years I began to refuse it. My oncologist insisted, but finally listened to me and said, "You don't have any bone mets, so we can stop." Too late. I got osteonecrosis of the jaw. No one knew exactly how long it stays in your system, but it seemed to be 9 months. I wish I had stopped sooner. I wish my oncologist had told me I didn't need it after a year or two. Now I have bone mets again and I cannot take it. I would hold it in reserve.
How long were you on Xgeva?
About three years. I should have stopped at 2. I was NEAD most of that time.
Ibrance + Letrozole just stopped working
Xgeva vs Cost
Xgeva
