Xgeva (denosumab) every 4 weeks vs 12 weeks?

[Suzierox]

After one year of Faslodex, Ibrance and Xgeva for various bone mets, my new oncologist is suggesting reducing Xgeva shots from 4 week to 12 week intervals. I have googled the heck out of this and am still feeling uncertain as to whether this is the right thing to do (my previous onc preferred 4 week shot). I feel so good that my current regimen is working (CT and bone scan last week were stable), so I'm hesitant to make changes without more knowledge.

I was wondering if others who are getting Xgeva shots at 12 week intervals could share their experience or thoughts about reducing the dosage.

Thank you, in advance, for whatever insights you can share.

My heartfelt best wishes to you all!

[Iwasborntodothis]

I "graduated" to 12 weeks - was told they dose you heavy to "load" and then back off - then I had some dental work so we stopped completely for four months, now back on every 4 weeks. Its very confusing but my bone mets are almost gone so I'm not gonna complain as long as I don't have anymore dental issues.

[Gwennie123 in reply to Iwasborntodothis]

I’ve been on Xgeva every four weeks for about three years. I’d like to know more about the long-term effects. I’ve never had side effects from it. I will talk to my oncologist about it next appointment.Thanks for bringing it up.

[Timtam56 in reply to Iwasborntodothis]

When you say your bone meets are almost gone... You mean they are disappearing?

[Iwasborntodothis in reply to Timtam56]

Yes...GONE! I was shocked because my hip and pelvis were both showing "pending fracture" in March of last year and every single vert was lit up. I'm chalking it up to a miracle for sure because there was only one tiny rib light this scan.

[Timtam56]

Susie. I'm on xgeva 4 weeks each time for nearly 4 years now. I'm scared cause I have some dental issues now. Don't know what's going to happen. But dentist tomorrow. He said he's going to try his best to save my tooth. But I don't fancy going to desk with jaw necrosis as well as everything else we have to deal with.

[Suzierox in reply to Timtam56]

Oh I'm so sorry to hear this. It is surely one of the biggest fears being on Xgeva. I am hoping for the best for you and that the dentist is able to repair the tooth.

[Iwasborntodothis in reply to Timtam56]

Please read my post about Xegeva and dental work. They can NOT extract a tooth. You can have a root canal but they need to leave the tooth in place and cap it.

[Timtam56 in reply to Iwasborntodothis]

Thank you. Yes. I think I remember your post. But I will read again. And yes. That’s why I’m so scared. I hope he will be able to save the tooth, and not have to go through coming off Xgeva and all that that entails. And… thankfully he’s a very very good dentist and know all about Xgeva. He actually rang me yesterday to see how I was going after my check up last week. I think it’s the first time I’ve been so cared about by a health worker in my whole life!

thanks Allison

[charola in reply to Iwasborntodothis]

Hello, I am new in the group. How do I find your post?

[Iwasborntodothis in reply to charola]

click on my profile and read my posts

[StE72 in reply to Iwasborntodothis]

Totally agree…just been through this. Had excruciating pain in my face, my face swelled up affected my eye, looked like I had been beaten up……dentist took xray and it was an abscess underneath a capped tooth. Oncologist told me to stop Ibrance and Denosumab inj (Xegeva). I was referred to Max Facial dept at hospital who confirmed NOT to extract tooth as could get infected and develop into bone necrosis…very frightening! Agreed with my dentist who proceeded to do root canal treatment …done last week..all good. I am back on Ibrance now (had to wait another week to check no reaction or infection) but have to wait for injection, will hear at my next onc appt in 3 weeks.This is the risk of injections…we have to have them to strengthen our bones but ANY sign of tooth problems tell them……better be safe than sorry.

[valentinecalico]

Hi Suzie.......I was on Xgeva every 4 weeks for 12 months after diagnosis, then switched to once every 3 months. Apparently this is standard at my clinic. All is going well so far.

[Suzierox in reply to valentinecalico]

Thank you! Good to know. Since I have only been on Xgeva since April, I messaged my Onc and asked if we could continue with every four weeks for another few months before switching to every 3 months. Glad to know you are doing well

[TammyCross in reply to valentinecalico]

Me too: once a month for...I don't remember if it was a year or 6 months, and then every 3 months. I got eczema from it, so we were eager to reduce the frequency. That worked.

[626262]

I was on the same regimen for over three years and my oncologist changed the xgeva dosage also. He said that new data recommended the change due to some bone damage risk. It was upsetting to me in that my bone mets have remained stable with the old rx. Others have been told the same. I doubt there is much choice in the matter and so I'm accepting the change with fingers crossed. Wishing you the best.

[Suzierox in reply to 626262]

Thank you for your reply. I feel the same…don’t want to change what’s working. Wishing you continued stability ☺️❤️‍🩹

[charola]

Hello Suzierox,

I have been on Zometa (similar to XGEVA but covered by medical health system here in Canada) every 3 months for a year and it has worked just fine!

I can see the difference in how I felt on my strenghth and mobility a year ago.

Have you asked why the doctor wants to reduce it? Mine told me that at some point the bones shot (ZOMETA or XGEVA) could be done every 6 months and then annually but that for now we should do it every 3 months.

I have learned to deal with the side effects as time goes by.

My next shot is due on the 31 Jan. This time we will switch to XGVEA as I have private insurance now (prefer a subcutaneous shot than intravenous as it was with ZOMETA).

I will see how it goes with XGEVA, it will be my first time.

[AuntC in reply to charola]

I get Zometa every 3 months, but I'm curious what side effects did you get? I feel a little flu-like for a couple days after and then I'm ok. I wanted to get Xgeva but my insurance doesn't cover it and it's too expensive for me. Best wishes to you.

Carolyn

[Rubyln15]

Hello Suzierox, I have bone Mets due to MBC that was 12 years ago. This came 5 years ago in my liver and bone. I was started on Xgeva at that time along with IV chemo. After 6 treatments I went on Ibrance, Letrozole and continued Xgeva. My Oncologist had me on every month for two years. He went to every three months after I had some jaw pain and dental issues. I still have jaw pain after each injection that lasts about a month. Im happy with every three months. I’m now on Piqray , Faslodex and Xgeva. Due to a new tumor in my liver. I say every three months is great. Best of luck to you on this crazy Cancer fight. Take care of yourself 😊

[Suzierox in reply to Rubyln15]

Thank you so much for your reply! It's good to know that every three months seems to be satisfactory for bone support. I've only been on Xgeva (along with Ibrance and Faslodex) since April, so maybe I should keep with once a month for a little longer and then switch to every three. My onc is leaving the decision up to me. Previous oncologist preferred monthly, new oncologist prefers every three 🤔. Best wishes! I hope your new regimen works well for you!