Hello all,
Localized spine bone Mets diagnosed 4 months. Completed spinal cement and radiation. Taking Letrozole and will start Verzenio. My oncologist also wants me on Xgeva.
I’m not sure I want to take Xgeva or how much I need it at this time. Any thoughts?
Thank you all so much for sharing your wisdom and experience. So comforting to have this forum.
Hi, I too have bone mets. I’ve not tried Xgeva, but I’ve been doing Zometa infusions for about 8mnths. From the little research I’ve done Xgeva actually seems a more effective option. There’s an article on breastcancer.org comparing them. Treatments have greatly improved my bone density…confirmed by scans taken 6months in. I have no pain now, except the week before my next dose is due, when my ribs ache again… so it seems to be helping there too.
I’ve only had light side effects after my first dose…nothing since then.
Wishing you all the best with your ongoing treatments.
Love Zoe xx
I have been on Xgeva for a number of years and i do not notice any side effects.
I'm on Xgeva shots & I'm taking Eximestane / Ibrance for cancer clump that suddenly popped up out of nowhere in my abdominal wall about the Spleenic area they'll told me. That's my cockatel.I take the shots in the meaty part of the back of my arm (tried the stomach fatty wall, but it left a big bruise). Side effect-wise, I've not noticed anything remarkabe. Unless you count that I'm no longer hungry most of the time & have to make myself eat something. Most of that is from the Exemestane & the Ibrance. I'll have occasional insomnia nights & then sleepy all day with a little light nausia (Ondansetron for that). If I get heartburn after taking pills, I have Pantoprazole SOD 40mg & my Oncologist encouraged me to start a regimine of Prebiotic & Probiotic gummies with at least 1 meal.
If the heartburn persists, then I grab a can of ginger beer. It's loaded with Ginger & the carbonation makes me burp. Any way I hope any of this helps, Good luck! You all sound like your doing great now & then. Hey!! 👍😉 🎂 Power to all!! As Pres. Obama said in his campaign, "We can DO this & Billy Crystal as Fernando Lamas on SNL, "You looook mäaahvolush!" (Don't be afraid to groan & boo. It's ok it was a bad immitation) hahaha. 😏
Love the attitude…
I went to see an orthopaedic guy as I wanted the cement but he said he would only do it after the bones break… your must have been in danger of breaking? Your treatment sounds very prospective meaning ahead of issues to come. Seems smart! My hubby wrote the article about xgeva for med journals… I know from him that it is really helpful to stave off bone break issues.. so I paid for xgeva vs getting zometa which was the funded drug in Nz… I had been on zometa 16 years ago prior to MBC and really didn’t want to go back to IVs before I absolutely have to… so take the xgeva as it is a shot if you are like me and want less time in the chair and more time out doing fun stuff!
I had breaks in vertebrae when MBC was diagnosed thus the bone cement. No pain in back now…I don’t feel like I have cancer thus the hesitation in taking meds that I know will make sick. I need a doctor who will listen and not just dictate treatment.Wish you all the best….thank you for responding 💛
Oops, my last para was aimed at Peggypilot. 🤦♀️
Wow! Your husband rocks! 🕺
I was on Zometa until I changed my care to the Royal Marsden Hospital where they put me on Denosumab (Xgeva). I had asked at my previous hospital but it was a “funding” issue! I’m pleased to be on it. It really helps with my bone pain. I had an excruciating fracture and hight reduction in my spine before being diagnosed. I’ve had no radiation to my spine so I’m presuming the “bone juice” (as I call it) is working. So I’m in the “strongly recommend” group!
Before my diagnosis I was a long term back pain sufferer with two prolapsed discs so no stranger to back pain. That also seems to be taken care of with the treatment I’m on. Hope this helps you make an informed decision. 🤞
Hi stardust. I’m thinking of getting a second opinion at the marsden. Can I ask who you see there? X
I am treated by Professor Johnston but in his clinic I am often seen by Dr Mark Allen. This is at the RMH, Sutton. I found a second opinion extremely useful. I hope you will too.
Thanks for this. I could go to Chelsea or Sutton. Chelsea has no parking. Which do you recommend? S
I’ve not been to the RMH Chelsea so can’t make a comparison I’m sorry. Parking is good at Sutton and I am pleased with my care there. I went there as it was conveniently closer to where I live and I wouldn’t face a longer drive across London. 😊
hi Peggy.
i've written on this several times but will mention again. zometa and xgeva are not just given to make the bones stronger.....although that is a great reason/bonus by itself. i think that is how oncologists present it because it is so easy to understand. the other main reason for giving it, is that it (zometa and zgeva) changes the 'microenvironment' of the bones, making it a less favorable environment for the cancer to grow. think of the bones as 'the soil' and think of the cancer as 'the seeds'. if the soil (bones) is bad, the seeds (cancer) won't grow as well.
i chose to take Zometa for four years mostly because the changing of the microenvironment of the bone made sense to me, as far as limiting cancer 'spread' (mets) to the bone. i personally was worried about the risk of ONJ (osteonecrosis of the jaw), but after much thought, made my choice to go ahead and take the Zometa.
like with all meds we take, there are benefits and risks. we all have to decide for ourselves which risks we are willing to take and/or if the benefits outweigh the risks.
best wishes in making your decision....
carole xo
That's interesting, re-changing the microenvironment. I have not read about that before
hi 13plus. i thought so too! makes me think of a 'cancer repellant'...lol. so back when my oncologist wanted me to start on Zometa, i was hesitant. i had strong bones back then from being very active and didn't think i needed the med. and extremely worried about possible ONJ risk. but then she mentioned the 'microenvironment' benefit. went home and researched myself...had to do some digging....but found same information. so then it sounded like a cancer fighting drug to me and i was in! and as my bones weakened, it was good bone strengthener after all.
i did go off of it 6 months ago due to my jaw slighty lighting up on bone scan. decided i didn't want to push my luck, my oncologist agreed, and now off for good. but i did get four years out of it.
best wishes......
carole xo
Thank you for the explanation Carol! I never really gave it a second thought tbh. My Oncologist said Xgyva, I said I trust you. Go for it. But this is reassuring that, yes, she knows what she's doing. 👍
Thank you Carole…I so appreciate your informed opinion. How are you? Enjoyed our chat.
hi Peggy. hope this explanation helped a bit. enjoyed our chat as well. honestly, i was worried about all the side effects making me feel sick too.....back at time of diagnosis in 2017. i never did agree to the CDK4/6 inhibitor. mentally, it was the right decision for me at the time. my oncologist does not always agree with me but i get final say as to what i put in my body.good luck with all....
carole xo
Hi Peggy, I was also anti-bone building drugs, but that was before getting bone mets! I highly recommend Xgeva. It's just a quick needle, and it has not given me any issues at all (fortunately!).
It was the first medicine I had access to after my diagnosis of mets (so before the iBrance was started) and I started to feel better physically just while taking that (I am typically very active) so it obviously made a quick positive difference to my bone structure.
The only thing I would do is run and get your teeth checked and any necessary work done before you start the Xgeva. I have a healthy mouth but I know that's what the doctors recommend, for good reason.
I've been on Xgeva for a year now, injections every 4 weeks. I also take Calcium + Vit D supplements which the Xgeva needs to feed the bones. As far as I know, I have no side effects from it. I say "as far as I know" because I started it at the same time as having my FEC+D chemo and have continued through surgery and radiotherapy and, since October, Ibrance + Letrozole. Therefore, it would be impossible to pick anything out to connect specifically to the Xgeva - what I can say is during the months between chemo and starting the Ibrance, I didn't notice anything out of the ordinary. My bone mets are on my spine and pelvis. One on my T12 vertebrae was quite big so I had radiotherapy on it in December - it wasn't causing any issues but was noticed on an MRI so they took immediate action.
I can only add to the wonderful help you have already received. Get a second opinion if you are in doubt and don't be to quick to change meds. Even with a slight progression. You are right. This is a wonderful site.
Cheers, June S.
I too started Xgeva before any other treatment, and my bone pain reduced significantly.Here in the UK Denosumab (as we know it) will be available for home use as of the end of April, so we can do the injection ourselves, which makes less trips to the hospital.
Take care
Clare
Hi Clare! That’s good to know that Xgeva /Denosumab will be available for home use in U.K. at end of this month ... I am not on either Zometa or Xgeva yet , but I’m all for as few trips to the hospital too! Enjoyed an ebike local outing earlier today in lovely sunshine here ! Have a lovely weekend ! x
Wey hey the bikes are out. It’s lovely to get back in the saddle again isn’t it? On Turbo of course!!Clare
Yes , love being out in the fresh air , nature and sunshine ...and mine often involve a cappuccino and cake stopover !! Today’s was avocado, lime and pistachio cake... x
I’m on Xgeva took down from 4x /ye to 2x/yr I didn’t have problems with bones Once in it now that intake is less I feel a little more vulnerable I’m going to discuss more thoroughly with inc. I also wanted to reduce amount of chemicals in body and worried about jaw problems.
Hi Peggy ! I can’t advise you about Xgeva / Zometa as I haven’t yet taken any bisphosphonates for my bone mets , but haven’t ruled them out should the need arise in the future . I currently take Adcal (calcium and vit D )prescribed by my onc , and vegan glucosamine for my joints. My low volume bone mets have been ‘stable’ for around four years and I do not have bone pain, nor had fractures . I do have some concern about the long term side effects (jaw bone ONJ and potential femur breaks )from bisphosphonate treatment, especially for those taking them over a long period , but I also realise you have to take everything into consideration and will be guided by my onc at the time . Till then I will keep good dental health with six monthly checkups and any necessary dental treatment up-to -date . x
Thank you so much…yes my bone Mets isn’t bad ; like you I don’t want to incur more issues from the meds. I think I need a second opinion. My onc does not like being questioned…nice to hear that you are doing so well! Are you vegan?
I am not vegan but I have been vegetarian for 40 years ( but I have always eaten some dairy ). I am not strict regarding diet … eat a fairly balanced diet but have daily treats !!!
There is research that probes xgeva prevents bone fractures. The downside is the possible risk for osteoporosis of the jaw if you have invasive dental care (not teethcleaning ). And the risk for possible fracture of the femur whenever you might decide to stop taking xgeva. Talk to your doc and make a decision.People are living longer on meds like Verzenio. Good luck. Ihave been on a similar medicine without progression for almost 5 years. I am also taking letrozole and xgeva. Wish you the best.
❤
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