Hi I’ve never posted here but have been reading post from others.
I’m 74 ER+/Her2-, de novo diagnosed on 2/14/23 stage 4 MBC bones only, had 3rounds of Lbrance and now only on Letrozole for the past 8 months and have had no progression and my bones are healing PET scan shows. Tumors in spine shrinking and my CA antigen 15-3 is in normal range at 23.
My question is about Xgeva , I am really NOT in favor of taking it and wanted to do things naturally.
Is anyone currently taking Xgeva shots and how often and for how long and what is your experience .
Thank you so very much for any info
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HawaiiLulu
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It did not work for me, i.e. we are not sure if it did anything good, but it damaged my Calcium/Vitamin D intake to very dangerous levels, despite taking extra Calcium tablets during the first month. It took 6 months to restore them. I will not try again.
I have been recommended "Zelendronic acid" instead, but have not found enough information to dare to try in.
At one point years ago I was so depleted of vitamin D and my endocrinologist was very worried, so hearing about your situation kinda worries me. I’m happy your levels came back up for you and yes investigate that alternative before you decide what to do . Thank you again for your info I really appreciate it .
I would suggest taking weekly calcium tests. The problem is that the doze is for a month, but nobody tested me until after the first month and then it was too late to correct. If you check every week, you can catch it early.
I have been on it for a long time. I can't remember when I started but it has worked for me. I was getting an I injection 💉 every 28 days until just recently . Now I am getting an injection every 56 days. I have gone from having osteopenia to being in the normal range 🙃. This has been since 2016 to get to this point. Hopefully my fractured ribs are a thing of the past.For me it has been a wonder drug without any side effects.
I hope you and your doc can make a decision that is right for you.
Thank you so much Sharon for replying back to me . I’m very happy it has worked for you and has given you great results . I have a lot to think about after reading so many reply’s , but I am grateful for all the info everyone has posted to me . Thank you again n keep doing well 🌹
Thank you so much Cherry , appreciate your info , I have lots to think about and have the time because I’m supposed to take care issues with some of my teeth . You keep strong too , Thank you
I've been on injections every 4 weeks ever since my diagnosis April 2021. I also take Calcium and Vitamin D supplements as prescribed. I have no side effects. All scans show it is working and I had a Dexa bone density scan done last year which showed good bone health (apart from the mets obviously). My 4-weekly blood tests also test for phosphate levels because the calcium can push that out of your body but I've always been ok.
My main concern as been if I have a fall or other injury which causes a fracture, does this leave the door open for cancer? Therefore I am happy to keep on with the Denosumab (Xgeva) as long as my oncologist wants me to take it.
I guess you should speak to your oncologist. They may suggest lower dose if you are doing well.
Hi. I have extensive bone mets, as well as mets to lungs and liver, diagnosed De Novo August 2022, and have been having Xgeva shots since January 2023. Prior to having Xgeva I had several pathological rib fractures, and radiation to my spine. I have the shots every 28 days in my upper arm. I feel very slightly nauseous the evening after for a couple of hours. I've not had any other side effects and latest scan shows bones are stable. I was also very reluctant to start Xgeva but the oncologist was concerned with my extensive spine mets. Wishing you all the best.
I know there are some women on this forum who have had ONJ and am grateful for their input/advice on managing it. I’ve been ok so far and have had it monthly for 2 yrs, 6 weekly for almost 6 mths and due to reduce to 3 mth intervals. I was terrified about osteonecrosis due to mouthful of very old crowns and extractions and even a prior recent experience of bone infection but I vastly improved my dental hygiene and use high strength fluoride toothpaste and have fab dentist. Seems ok so far and my lower leg managed not to break when I dropped a concrete weighted heavy wooden pallet on it. So I shall continue on xgeva.
I’ve been on Xgeva since I was diagnosed de novo stage four in mid 2015. I have bone mets everywhere, a pathological hip fracture and T7 vertebrae is also fractured and compressed. I started at 4 weekly injections and that continued for quite a while. I’ve actually forgotten when I changed to every three months but it was during Covid I think so 2020. I’ve had at least two heavy falls onto concrete, one time on my pathological hip fracture and the other time onto my back with my head bouncing off the concrete. I have bone mets in those areas too but I didn’t have any ill effects.
When I was first diagnosed the consultant radiologist told me not to ever fall over as my right hip was so heavily impacted by the bone mets that surgery would be impossible and I’d be bed bound and I’d basically die much sooner as a result.
I don’t discount the risks and I go to the dentist every six months for checkups to get ahead of any potential problems and I take Caltrate Plus religiously. I always have a set of blood tests before the injection even though my local doctor now does the injection as I only go to the clinic twice a year for a review of the scans.
Some people have suggested that Xgeva assists in healing mets. It draws calcium from the blood stream into the bones and that aids in strengthening the bones. I don’t think there’s a natural solution because older women are also prescribed Xgeva for osteoporosis.
The radiologist said that weight bearing exercises help to strengthen our bones. I walk as often as I can because that’s a natural weight bearing exercise and I continue to do things that involve heavy lifting but lifting can be repetitive light weights too. You don’t have to deadlift 60kgs!
I don’t think I could have hit the concrete without injury if I’d decided not to have Xgeva injections. An oncologist told me that Xgeva is considered effective at longer intervals than monthly so if you’re uncertain about monthly treatment you could go to six or eight weeks and move it out further once you’ve had a bit of time on the drug.
Bone mets weaken our bones and Xgeva does work to change that but you will probably need the calcium and vitamin D alongside it. A blood test will show whether you do or not.
There’s other bone treatments but Xgeva is the easiest delivery. I have mine in my belly area as it’s required to be delivered into fat not muscle. Injecting into fat, like insulin injections, is basically painless.
I’m sorry I didn’t take it sooner as my dr recommend. Now I’m dealing with multiple fractures of my Betty. No opioid relieved the pain. Now the doctor has put me on fentanyl patches not sure if they will work either. Good luck in your decision
Hi HawaiiLulu, I’m ChicagoLali. I dragged my feet about starting Xgeva because I prefer doing things with as few meds as possible. I finally agreed and started monthly shots in the arm, which didn’t hurt and I experienced very little by way of side effects. After one year, the frequency was changed to every three months. Everything was going smoothly until I started growing bones in my mouth (at the site of my one and only crown) and ONJ was diagnosed by the dentist. The shots then stopped. I don’t experience pain in my mouth but I am still pretty new to this development. I never fell and I’m not sure that there was any testing done to see whether or not my bones were strengthening. If I had to do it over, I would have trusted my instincts and not had the shots. I asked the oncologist if she would still recommend knowing the end result and she said yes. My bone mets are fairly extensive but not debilitating to me in any way. I hope this helps you but more importantly I hope you live in Hawaii and are enjoying some sunshine.
Hi! Kim 43 hr + her2- bone only Mets almost every bone every vertebrae neck ribs hips sacrum down to both knees - ive been on ibrance 125 since 3/2021 letrozole and xgeva every 4 weeks. Ovaries removed. 6 months after ibrance I had no evidence of active disease and sclerotic/treated bone since 9/21. I was 40 when diagnosed so I spent a full 12 months looking at every article, clinical trials, I even consulted with Dr's in Mexico to make sure I was doing everything I could and until I hit 5 years I won't consider stopping any of it. The xgeva makes my joints hurt and it makes me so nauseous but other than that I have no complaints. I mentioned the extent of my bone Mets so you know why xgeva is so important to me but everyone is different so it depends on what you're comfortable with. Worse case scenario you stop and start again. Right? When you look up xgeva online it says that it stops cancer signals and heals bone so I need both.
My profile is similar to yours, but my mets are some bone, some lung, metastatis since Jan 2023 and on Ibrance/letrozole/xgeva since then. I currently have No Evidence of Active Disease so my doc at Sloan Kettering is keeping me on the Ibrance, as long as we can manage my white cell count, which can be a challenge. I am not sure why your doc would take you off Ibrance after 3 months if it's working. Also, regarding Xgeva , my former doc started me on it monthly, and it did relieve a lot of back pain, even pain I had prior to cancer from osteoporosis. But by the third month we backed down to a six-month regimen because I was so worried about ONJ. Sure enough, I still had a very brief bout with ONJ which very luckily healed itself in three weeks because I had a great and caring dentist and a really good consultation with an oral surgeon. It's been explained to me that the half-life, so to speak, of xgeva, and also prolia, is 6 months. So if your doc is giving it to you every month or even every three months it's really building up in your system. Even at 6 months, not all of it goes through you. I've always had great teeth, so I was surprised when I suddenly had this terrible mouth pain that ended up shedding a couple tiny pieces of bone and then healing over. But the oral surgeon showed me on an x-ray how my jawbone had permanently thickened, a direct result of the xgeva or more likely the years of prolia taken for osteoporosis. I can't tell you how upset I was that I might not be able to eat for months without pain, and how it would affect my diet and my health. Or how relieved I was that I never really went on a monthly xgeva routine. I am enormously lucky I healed and hope I can stay off xgeva entirely in the future, doing more weight-bearing exercise. When you're on prolia, the docs are very careful that you only get your injections every six months. xgeva is twice the dosage but I feel like it's handed out like candy to cancer patients because it relieves pain. BUt there really is such a thing as too much, and as someone mentioned, you really have to watch your calcium levels too, and take a lot of calcium for the first two weeks after you get your injection. There is no reason us cancer patients can't also have quality of life and after having that brush with ONJ I would do anything to avoid taking xgeva unless I absolutely needed it and to try and take it at 6-month intervals at most. Once it's built up in your system or you actually get ONJ, it may be too late to do anything about it. Best of luck on your journey and please feel free to reply with more questions........
hello…I’m sorry about your diagnosis…your concerns about taking meds to address the metastasis are valid but in the context of taking a bone supporting med, you may have to give it serious consideration. Zelodronic acid was instrumental in rebuilding bone destroyed by my tumor. I continue to get it on a quarterly basis to keep ahead of the metastases. Yes, you have to be aware of ONJ and take care when to do dental work. I’m not familiar with Xgeva but you can have the discussion with your doc about why this particular med as opposed to others. The threat of fractures is very real and can be helped with the use of appropriate meds. I do understand how cancer patients want to take the minimal meds … I’m one of those for sure. No point in destroying the body in the effort to attack the cancer 🙏🙏
I’m on the other option, Zometa, since 2015. It’s working well and the only side effect is tiredness the day after the infusion. My entire skeleton has mets since 2015. Good luck!
I didn’t have any reactions to Xgeva, but did have a major (they say rare) side effect—ONJ. I had been on Zometa before that for a total of 6 years on bisphosphonates. Maybe ONJ is better than major bone breaks! We apparently get a higher dose than people with osteoporosis. Ask about that! Do you have osteopenia or osteoporosis?
Yes, prolia and xgeva are the same med. Xgeva is given for bone mets, just a much higher dose.
I had ONJ on Xgeva and lost part of my jaw and some teeth. I don't know how to compare that to a major bone break. I never had one. I was on Xgeva because it healed the bone mets very well. I had had osteopenia after my initial diagnosis but got rid of it through exercise. The thought was that fulvestrant and AI's would weaken my bones. I didn't have bone density tests so I don't know if I had osteopenia again.
Bone meds like Xgeva do alot to help us live with bone mets. You can get Xgeva shots just every 3 to 6 months if getting them more often concerns you. I am a long timer--diagnosed with "extensive" bone mets from the get go in March 2004. Last year I developed osteonecrosis of the jaw, a rare side effect, but I have gotten good dental care my whole life and it was discovered right away and an oral surgeon helped me get it under control right away. I would encourage you to take Xgeva, or the older med, Zometa . We don't want broken bones!
I’m not taking either since the onset of ONJ. There is an alternative to Xgeva and Zometa that is prescribed for osteoporosis, but my insurance wouldn’t pay for it—ONJ is off label treatment.
To Everyone who has been so kind to reply to my post I thank you all from the bottom of my heart . I am so overwhelmed by all of you taking the time to help me with your info. I can’t answer you all now individually so please forgive and I want you all to know how thankful I am for all your kindness and all reply’s and info.
Bless you all ♥️and I pray we all have good results in this journey we are all on. We must never give up hope.
You all are amazing women with faith hope and love . Mahalo and Hugs 🌹
You are in Hawaii? After initial bc, and lumpectomy on left breast, I was careful not to use my left arm much out of fear of lymphedema. I never got that, but I did get osteopenia in my left arm and lower spine.
They told me swimming wouldn't help because it is not weight bearing. Of course, that isn't exactly true. I swam laps, an hour a day, and did water walking, and poof, no more osteopenia.
Now I probably have it from the medications, but I cannot take anything because I already had ONJ. I wish I could. I wish I had stopped after two years, when my bone mets were gone. It took 9 months to clear out of my system, too late. It was two implants that got the ONJ going. A crown and an impromptu extraction were fine.
I no longer have my own clean, private pool, but I assume you have swimming options.
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