Femur fracture caused by Xgeva

[DorisGarrett]

I’ve been on xgeva for 6 years for bone Mets. Monday’s bone scan showed a new focal spot. This led to an X-ray of my femur. It appears I have an insufficiency fracture due to the prolong use of xgeva. My oncologist is stopping the xgeva. Anyone else experienced this? If so what replaced the xgeva?

[Bettybuckets]

Hi Doris! Just wondering if you took xgeva monthly or quarterly?

[DorisGarrett in reply to Bettybuckets]

I took it monthly about the first two years. Then began tapering off to every two then three months and then finally this last year every six months. I never had any issues up until now.

[Valisa]

I was on monthly xgeva injections from May 2019 until October 2021. My last bone and CT scans indicated I had a new lesion on my right femur that is at high risk of a stress fracture. My oncologist discontinued the xgeva moving forward. I will not be receiving an alternate treatment. I have extensive bone Mets.I did receive zometa infusion in Dec. 2018 and March 2019 before changing to xgeva.

[Valisa in reply to Valisa]

I am also currently on Letrozole and 75 mg Ibrance monthly since Dec. 2018.

[Klamato in reply to Valisa]

I cannot be given any bone agents due to the fact that I have osteonecrosis of the jaw. No one will give me an alternative bc of the seriousness of this condition. All I know at this point is that my docs should have looked at WHY I broke a femur bone a year and a half ago, then continued to give me the Xgeva injections! Now I am on my 7th week of recovering from yet a SECOND femur break! Someone wasn’t do their homework and I was at their mercy! Go figure! These side effect, I was told by my surgeon, is NOT that rare bc he’s has repaired many because of the Xgeva women have been taking! It infuriates me that this piece was not investigated before I broke the second one! God help us all! Kathy

[EvaL]

Hello, my experience with Xgeva caused problems with my jaw. I was told to take calcium and vitamin D. I went to my health food store and they do a lot of work with vitamins. My calcium I’m supposed to take it after each meal. Good luck, I know I have been very upset about that Xgeva.

[Klamato in reply to EvaL]

Please read my response to Xgeva! Because I have taken it for more than 3 years and have had 2 femur breaks and osteonecrosis of the jaw! Please be aware! My oncologist never told me after the first femur break that it could have been caused by Xgeva and I continued to have those injections only to endure yet another femur break of my other leg! This is truly devastating and what can we do about it but suffer! It’s not bad enough to have 4th stage cancer, but to have these side effects to affect our overall health and well being is terrible! My oncologist said it was extremely rare to have these breaks and when I told that to the surgeon who operated on me, he said “ she is wrong,because I have repaired many of these femurs because of this drug and the biopsy of the area that broke showed NO CANCER! Go figure! I will tell anyone to stay away from that injection! Thanks for listening to my rant! But this is really terrible! Kathy from Syracuse, NY

[EvaL in reply to Klamato]

It is very scary. I never really had any pain in my mouth and I went to my dentist regularly so I thought I was fine but my pain medicine took care of the pain. I’m just afraid the pharmaceutical companies are making money on these meds and really don’t warn enough. Don’t ever worry about getting on a rant with me I just want to make sure people know. I don’t want others to go through things like we are facing if they don’t have to. I pray you have a good week. I get to go spend a few days with my grandson and my daughter’s family which make living with this cancer bearable.

[valentinecalico]

Hi - I was on monthly Xgeva injections for a year after diagnosis, and from then I get it every 3 months. My oncologist said the 3 month regime after a year was to reduce the risk of side effects caused by the Xgeva. It isn't comforting to know that this isn't standard though - that others have different protocols.......

[TammyCross in reply to valentinecalico]

My oncologist did the exact same thing - monthly for...I forget, 9 months? Then every three months. Seems to be working find, and the monthly gave me worse side effects.

[Klamato in reply to TammyCross]

Please don’t take this Xgeva, I’m on my second femur break and osteonecrosis of the jaw caused from taking Xgeva!

[diamags]

I was on it monthly for 7 years. No problems. Then my doc wants quarterly. I'm not happy about that, but what can I do?

[Rhwright12]

Hi Doris! Sorry to hear about your broken femur. I just got off Zometa after 4 1/2years…I haven’t had any problems yet. I use organic AlgaeCal if u are looking for a bone strengthener. Google it. It’s Algae based Calcium combined with Strontium. Can’t remember the exact dosages though ….😀

[OneLump22 in reply to Rhwright12]

That's interesting. Going to ask my Onc about that. Is it better than plain Calcium +D suppliment?

[Pachira]

Hi Doris. I’ve been on Xgeva for 5 years. Lost partial sight in my left eye then the same was happening on my right eye. I attended a. Uveitis specialist in Portland Oregon who ran many tests and concluded it was the Xgeva. My last shot was July and now I’m trying to dial down the panic as there is no way off this drug. If you can take a bisophonate that might help but it also has the same problems with fractures after a time. I’ve now got a pain in my jaw so hoping it’s not the start of ostenecrosis. I watched a doctor on you tube referring to it as a “dangerous drug”. Now so far the cancer has stayed in my bones which might be due to Xgeva but the “rebound effect” as they call it seems to have no answer. Staying on or coming off it’s the same problem. I’ve been taking a calcium tablet and I go back to the Onc in January. When I mentioned the rebound effect he said “don’t worry, many people have stopped it with no problems”. I’m not sure about the medical field these days but I will talk to him about a scan to see if they can tell me the likelihood of a fracture. It would have been nice to know this before we started it.

[Klamato in reply to Pachira]

Don’t believe your oncologist about this drug! My oncologist told me that those side effects were rare, however I ended up with 2 broken femur bones and osteonecrosis of the jaw! The docs just don’t want to be put on the spot about these drugs, but my consult with both my surgeon and my dental surgeon confirmed that these side effects are caused by taking Xgeva and that the oncologist says it is “very rare” is BS . Someone need to speak up and I plan on doing just that since I am on my 7th week of trying to recover from the second break! This is disgusting to say the least and the pain that I’ve endured is the worst! Please don’t take that injection no matter what!

[Pachira in reply to Klamato]

Thank you for sharing. My last injection of Xgeva was in July. I’ve had a weird thing going on in my gum so when they took an X-ray last week the dentist referred me to an oral surgeon as he sees bone loss in my jaw. I wish I’d never gone on this drug but it was lucrative for the hospital. My Onc has so far refused another dexa scan but I have an appointment with my primary that ordered it two years ago. It seems Xgeva stays in your body for years so I’m not sure when you’re safe from the side effects. It will be 2 years plus I’m sure. I’m sorry about your pain. Can they do something that will work to keep you mobile? Chris

[KatyAnn]

Hi Doris. I’m confused as Xgeva is supposed to strengthen bones. I’m so sorry. Tell your Doctor to explain how & why this happened. Hope your pain is under control. Hugs 💗

[Klamato]

My dear lady, I have just endured my SECOND FEMUR BREAK! I’m not a happy camper! My oncologist did not even mention that first break which was July 2020had anything to do with Xgeva and low and behold I was having a lot of pain in my other leg this December 2021. The radiologist suggested radiation because of a very small lesion on the femur, however before I got to have that session, the femur broke on its own. My surgeon has told me that these breaks were caused by taking Xgeva for more than 3 years! Who knew? I’m am into my 7th week of recovery, going to therapy, and still having a lot of pain! In addition, I have jaw pain and have been since diagnosed with osteonecrosis, which Is the deterioration of the jaw bone! I am devastated with this outcome from taking these Xgeva injections! I hope this gives everyone on this site a heads up about this treatment! Kathy Klamm, Syracuse, NY

[Pachira in reply to Klamato]

Sorry I just read this post where you explained your treatment. I was on it 5 years but I think the Se can happen even sooner. What I read was that if you used a bisophonate first then it was easier to come off Xgeva but I was never given that option. Yes I hope people reading this site do some research as it’s all out there. Chris