Zometa vs Xgeva

I just read a few posts on bone fractures caused by Xgeva. Thank you for posting. My doctor is making me choose before Xgeva and Zometa? My head is spinning … newly diagnosed, so my head is spinning! Any views out there?

[luckysmom13]

It's strange to me that your doc would ask you to choose. Did they give you the pros and cons, frequency of side effects?

I used to be on XGeva and I developed osteonecrosis of the jaw (ONJ). I've chatted online with 8-10 people who developed ONJ and most were on XGeva. Just an observation, certainly not scientific evidence!

[Hidden in reply to luckysmom13]

Thank you for your reply. I have options from different oncologists as well.

[Cureforever in reply to luckysmom13]

Hi. How were you treated for that? I believe I have it as well but the oral surgeon is not sure if it is that or infection

Thanks for sharing

Best,

Marina

[luckysmom13 in reply to Cureforever]

The first oral surgeon was meh, IDK if you have it. Endodontist did a CBCT in the office and diagnosed it. It's a special CT that they use for oral scans.Oral surgeon #3 put me on Peridex oral rinse to help prevent infection. Antibiotics as needed as infections did pop up. Eventually the bone loosened and they pulled it off. It was ready. Just watch and wait after that.

[Cureforever in reply to luckysmom13]

Thank you so much for your reply. The oral surgeon did that ct scan but did not diagnose it. He sent me to the ontodontist. My dentist is planning to do laser He hopes it will help the infection. Best,

Marina

[Cureforever in reply to luckysmom13]

What is meh and idk?

[luckysmom13 in reply to Cureforever]

Meh is an expression of apathy or lack of interest.IDK is I don't know.

😂

[Cureforever in reply to luckysmom13]

Thank you. I got it. Best,

Marina

[Nocillo]

I’ve had Zometa every 3 months for 7 years. The only side effect that I can pin down to that drug is tiredness for the 2 days after my infusion. Otherwise it’s been fine. Fingers crossed!

[Hidden in reply to Nocillo]

Thank you. Yes, my oncologist

[ELF5068 in reply to Nocillo]

I also have infusions every three months and, like you, feel a bit tired for two days afterward. Other than that, there are no additional side effects. I use the two days as an excuse to be lazy and just read or binge on things on Netflix or Amazon Prime or Hulu. 😁

[mou466]

I’m in the same boat. My oncologist asked me to choose between the two. He didn’t explain anything about how they work or possible side affects. I was put on the spot and I said that I would take Xgeva because it’s the newest drug and might be easier to take (injection) than Zometa (Intravenous). I had no idea! He wrote me a script for monthly Xgeva injections for 5 months. I am too scared to take it! My intuition tells me that I will regret it. There must be safer options available! I know that some women take it without any problems, but horrific side affects can happen when you stop taking it. I’m very interested to learn more from others who have more information/experience with these medications. Glad you ask the question!

[Hidden in reply to mou466]

My thinking exactly, a newer drug should be an improved version. I am just concern that Xgeva is forever (per my oncologist) and I am still doing research. Thank you for your reply.

[mou466 in reply to Hidden]

Please keep me posted of what you find from your research. 😊

[wendle3007]

I've been having Xgeva injections every 4 weeks since April 2021 and have no side effects with it at all. I did have a pain in my face at one point which I thought might be a tooth abscess but the oncologist asked to examine me to rule out the jaw issues which luckysmom refers to. Neither was the case in the end but I was pleased that my oncologist knew of the risk and checked it out.

[Hidden in reply to wendle3007]

Thank you!

[Beryl71]

I have zolondronic acid but no idea which type. I didn't stay til 18 months into treatment. Yes I was told very rare occurrence of fracture of femur, but oncologist said he'd never known a case. So I've gone ahead. Good luck. X

[Hidden in reply to Beryl71]

Thank you!

[Timtam56]

I'm an Xgeva girl too. Been on it for 4 years. And ibrance 100mg. And anastrozole. I'm on so many medications... Not just cancer stuff. So who knows what the size effects are. But I'm still on 1st line of treatment and going well. So I can't know the difference. But good outcome so far.

[love2golfwell]

My oncologist wanted me to go on one of those medications when I was diagnosed in fall of 2020 and I refused after reading about all of the side effects, which I found out on my own not from my doctor. I was especially worried about the ONJ and fractures that could occur in the femur. When I showed my doctor the list of side effects I had read about she said she had given out thousands of doses and none of her patients had any of them. I found that very hard to believe. I added more calcium and Vitamin D to my diet and have been fine so far with good scans and bloodwork. I am not saying you should not go on them as many on this site have had good success with them. I just think you should have further honest discussions with your doctor about the risks and benefits. My doctor actually offered me an option of getting Xgeva once every 6 months like Prolia is administered (this is the same drug as Xgeva but a lower dosage). I think she did this to pacify my concerns. My sister takes Prolia and has not had issues with it. She has been on it a few years. So far I feel good about my decision, but will see what the future holds. Best wishes to you in making an informed decision. Sending hugs.

[MaryCos]

I do Zometa infusions every 90 days to PREVENT fractures. I have heard other people say that they have some side effects, but I never have. (Started Zometa in July 2020.) Incidentally, this is also warding off osteoporosis for me. I won't ever stop these meds unless I have no choice.

You need to come off Zometa for a time if you need to do any invasive dental work (including extractions), which would otherwise put you at risk for ONJ. Meaning, you need to time dental work correctly and a dentist/oral surgeon would need to coordinate with your oncologist... between your last infusion/IV treatment and how soon you resume after dental interventions. Beyond that, I have no worries about Zometa. Has worked great for me. (I did also up my Vitamin D to 5000 units a day and take 1200 calcium daily.)

[gerisplace]

I was diagnosed with MBC in March 2017. I got Xgeva monthly injections for four years and Zometa every three months since. April will be my last as my oncologist says five years is all you should have them as they are ineffective after that. I have had no significant side effects from either.

[PJBinMI]

I was diagnosed with metastatic lobular breast cancer, bone mets only, no earlier bc diagnosis, in March, 2004, 18 years ago and have been on Zometa and then Xgeva all this time. The onc I saw until her retirement about 4 years ago was amazing, very up to date, good at communication and attended the San Antonio BC Symposium (biggest BC conference for oncs in the US) every December, and widely respected by other oncs, including the top BC oncs in our state. Zometa was the best med for bone mets when I was diagnosed and I got it monthly until she attended the 2004 SABCS, when the first research on OsteoNecrosis of the Jaw and Zometa was presented. So.....I was immediately switched to having Zometa less often, every 4 months I think. She had told me about ONJ as a rare wide effect of bone meds and also said that those of us with a history of good dental care were much less likely to develop ONJ than those who didn't. She advised patients with bone mets to get a good dental exam and any invasive dental work needed done before going on Zometa. I had to have a tooth extraction before this connection was know, and after about five monthly Zometa treatments. I had no problems. In addition, I am allergic to Zometa and my onc had me on a half dose with pretreatment of IV benedryl and hydro-cortisone with Zometa then infused over 2 hours rather than the usual 20 minutes. As soon as Xgeva was FDA approved, I switched to it.In the years I've had this lousy cancer, I've attended many bc and mbc conferences and done alot to educate myself about MBC and treatment. I've met alot of MBC patients and patient advocates. I've known only about three people who have developed ONJ and they;ve all been able to manage it. So, I don't worry about it any more. One of the friends with ONJ kept getting infections in her mouth and a dental school professor she saw suggested she brush her teeth with Arm and Hammer Peroxicare toothpaste and rinse her mouth with original formula Listerine. She started doing that and had no more infections, so I use those products, a bit superstitiously!

Regarding choosing between the two drugs, you might want to see what your co pay would be for each of them and that might really make a difference. I believe that Xgeva has a slightly higher incidence of ONJ than Zometa, but only a fraction of a percent difference. I forget what the incidence of this is. I think choosing would be very personal and up to you and I think allowing you the choice is reasonable, just as it would be reasonable for an onc to recommend one or the other. I certainly wouldn't judge an onc over that.

Some of us with bone mets only and an E + cancer do really well for long periods of time, and of course we don't know that ahead of it happening. I hope you will do well and will soon have peace of mind about this lousy cancer.

[Maludagui]

Hi 👋 From August 2018 to August 2020 I had monthly injections of Xgeva. Then quarterly. In January of this year my insurance sent me a letter saying that Xgeva would no longer be covered by the policy, because they were not sure if this medicine was necessary for me. 🤷‍♀️. This past Wednesday they gave me the first infusion of Zometa, that afternoon very well. But the next two days I was very sleepy and too fatigued. Next time I'll wear it on a Friday so I can rest the weekend. In my last CT scans, rapid bone deterioration (tibia) appears. a big hello from Texas

[SMPG]

I started with Zometa and after one infusion, I have up because I fainted after it (luckily at home). So, I am on Xgeva, every 3 months. I have no side effects from this. But this is just me. Everybody is different.

[Books48]

Hi, I chose between the two as well, when I read about xgeva and jaw problems, I chose zometa. I have not had any issues at all with it. Of course we all can respond differently, but for me am happy with zometa for now, unless it starts acting up then onco will try another. Let us know how it goes.

[mbc_carepartner]

If you can make the time, watching this Living Beyond Breast Cancer MBC conference session from last year will be super informative:

youtube.com/watch?v=YpFfLrI...(Not working as expected?)

Quick things to think about -- you can ask for a referral to an endocrinologist, when ready, to learn more about long term use of bone strengthening agents. There are no clinical trials/ studies showing when it's best to stop taking these drugs (either one) -- the drug companies don't fund studies that would show that reducing their meds works. You do not need to stay on them for a very long, extended time, but this is up to you and your onc.

What I learned from my sister's team is that 1-2 initial Zometa/ zoledronic acid infusions to start is ideal. If you tolerate it (side effects are manageable), you can stay on it if you don't mind the infusions (vs. Xgeva injections). Or, you can then switch to Xgeva for monthly injections and then cut back to every three months, and even every six months, before you stop Xgeva altogether (if your disease is stable and your team agrees) -- and when you stop Xgeva, you need to "seal off" the bone sites with one final Zometa infusion.

Annual bone density/ DEXA scans will show you how your bones are doing when on the meds and once off of them, too (ordered by your onc or an endocrinologist).

Biggest takeaway is to do weight-bearing exercise -- hikes, walks. Every day. And take your vitamin D and calcium if you don't get enough through your diet (labs will help you monitor).

All the best--