So which do you think is better? What experiences have you had with either or both? My doc is saying to switch but I am not actually sure why. I had questioned my onco about some serious health incidents and asked if the xgeva could be a reason and she talked about infusions every three months of the zometa and said she would have a hard time changing xgeva to every three months from every month. I wonder if that what political?
Zometa or Xgeva??: So which do you... - SHARE Metastatic ...
Zometa or Xgeva??
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blms
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Hello blms,
I have no experience with either, but I am awake, and realized that a lot of the ladies on this forum might not be able to reply because they are sleeping. I wanted you to know that someone was “out there,” hearing you and being sympathetic to your concerns. I am certain you will have replies by morning though.
Stay strong, and ask lots of questions of your doctors.
Best,
Colleen
Very kind thank you!
I don’t understand your Doctors response. Did she give you a reason why you couldn’t switch to every 3 month? Here a link that refers to a study which Xgeva was said to be better. breastcancer.org/research-n...
Cheis
The way she said it I could tell that it was a bit of explaining to the higharchy was the hospital for her to do so. BUT, I am certain she can. She did say that she preferred xometa and that although the studies show xgeva to be a bit better there really was little difference. Now, with that said, I have been on the basics of xgeva (prolia) for a number of years now. Prolia is simply a MUCH smaller dosage and given only every sic months. Where xgeva is mega dose and monthly. I suppose there is a possibility that it is now creating an issue for me after so many years and switching could be a decent idea. But, I was not convinced that I did not want to stay on xgeva and have it every 3 months as I see a lot of people here say they do. I had my last shot early July and would be due my next month shot this Monday. I am not having chemo this Monday, so no shot as I am taking a week off. I need to figure out which way to go so that is why I am putting it out there to all the ladies dealing with this.
I have read that after 5 years on a biphosonate there can be problems as it delays the fractures but maybe not indefinitely. There then comes a problem with fractures to the femur. I was reading a naturopath that said natural progesterone is better but my dilemma is being able to transition to something like that. As I’m having inflammation of the lungs bradycardia and now as of Wednesday Uveitus in both eyes, I wish I could have this conversation with my Oncologist. They’re always in such a hurry and to my mind it’s centered around Big Pharma. My understanding is that all biphosonates work in a similar fashion so it’s maybe how our body reacts to the side effects just like Arimidex vs Letrozole. I’m going to discuss this next time with the Onc as I’ll have been on Xgeva 5 years in January. They do say on my CT scan I have severe osteoarthritis in my hips but I don’t have pain. If we could just have one problem at a time it would be easier lol. So it would be nice if your Doctor shared why she thinks that Zometa is better for you?
Hahaha. My dad always said getting old is not for sissys! Boy was he right! Yes, pain here and there and never quite sure where it is cancer or just the many other age issues! So tell me about your bradycardia? I am wondering if that is my issue. Something strange with my heart rate and bp. I will see cardiologist on Monday. I hope to get answers soon as this is getting really annoying!!!
Yes that’s the saying!! My husband puts it down to a strong survival instinct. I’m tracking my bpm on my Apple Watch and since I’ve started walking more, I notice it’s increased a bit do today I was between 45 and 101. . The doctor said some people have low heart rate and it can be normal. So here’s my plan. I told my husband “ if I faint, call an ambulance as I’m probably having a heart attack” Lol that should do it!
Sorry for the double negative sentence!!
I have had problems with Xgeva. If you study the side effects it states if you have dental work you could potentially have problems. It also states general jaw bone problems. I agree that the big pharm has something to do with this but my opinion.
The dental issues are there for both products. I’ve had no problemswith either. I was switched to Xgeva when I switched from Ibrance to Afinitor (to Piqray). I don’t think it’s political or big Pharma. Ask about the science! My insurance covered something for three and a half years and now covers Xgeva….
When I was scheduled for my 1st Xgeva appointment I was VERY surprised to hear they switched me to Zometa. They had told me that my insurance would only cover Zometa and explained that they were the same exact medication just the way they were given was different. 1's a shot and the other is a 20 minute infusion. I never questioned it from there until your post. Im going to have to go Google it now. I just had my 3rd Zometa infusion and so far I'm feeling fine. The 1st 1 I suffered with severe nausea, 2nd 1 was less, and this 1 so far is nothing.
I agree with KimberlyB40 - I think a lot of it is insurance. I'm 75 and, of course, on Medicare. I was started on Xgeva and had shots each month with no problem. Suddenly I'm switched to Zometa infusion every three months. I pulled my insurance EOB's and was amazed at the difference in price. Having worked in medicine, I know that if Medicare deems two drugs equally (or close) effective, they will only approve the less expensive. I think commercial insurance also follows these standards.
In Canada the Xgeva is approx $700.00 a month out of pocket some health benefit packages through employer s will cover it . The Zometa is considered a “standard of care “ medication so it’s cost is covered by our general tax system .
I have been told both are really good . Just depends if you want to pay the $ or have benefits to cover it .
I have been on Xgeva for over 5 years and will likely be switching to Zometa in November IF my oncologist wants me to continue .
I have been on it so long I don’t even know if I have any side effects from it .
Luann
blms in reply to
Well that is good news! I honestly do not k ow what my symptoms are cause from at this point. My cardiac monitor indicates I have bracycardia . The cardiologist should be able to sort this out tomorrow or within the next week. I will gave another echocardiogram tithe following week
I'm no expert but my understanding (retired nurse practitioner, 4 years with MetaStock breast cancer, taking ibrance, letrozole and xgeva) everything you take has side effects. Xgeva prevents bone fractures and is the preferred med. Try again to get answers from your doc, if you are not satisfied, use your resources get a recommendation for a second opinion frome someone/s you trust. Get a second opinion and switch docs if your comfortable with that person. You deserve good care and aversion who listens and you can understand.I have had to switch docs, l know how hard it can feel.
I'm with you. 3 years in October same meds. I do get up in the morning like a creaky old lady but then it goes away. Seriously need to add exercise to my regimen. I also take calcium and vitamin D every morning. Xgeva has been good to me no side affects and for all of us I'm beyond grateful to be here past that statistical "two" years.
I’m on the same regime ,yes I creak in the morning but a small price to pay xx
I'm a long timer (17 + years with denovo mbc, bone mets only) and Aredia and Zometa were the bone mets meds available when I was diagnosed. Zometa was newer and both those are IV bisphosphonates. I started on Aredia (older and presumably cheaper for insurance) but had an allergic reaction so was switched to Zometa which I also was allergic to, so I ended up getting pre-meds of cortisone and benedryl (both IV), half dose of Zometa, longer infusion time (2 hours vs 20 minutes) and extra fluids. Initially every month, but in December 2004, the San Antonio BC Symposium had alot of info about bisphosphonates causing osteonecrosis of the jaw ( ONJ) in a relatively small percentage of people on it. So oncs all over the country, and probably the world, started having Zometa given every 3, 4 or 6 months instead of every month. It has a very long half life compared to most drugs (months rather than hours or days) so there is still some in our bodies at those less often times.
I forget exactly when Xgeva became FDA approved, but I was switched to it shortly after that, and don't think I have ever gotten it every month.
The stats for strengthened bones and ONC between Zometa and Xgeva gave Xgeva a very small advantage. Some of what we are given is insurance driven. Zometa is older so presumably less expensive per dose while Xgeva is newer and likely more expensive but less costly to administer. (IF you have followed all this, give yourself a pat on the back for brain function! lol
One of the things I liked about Zometa, esp when getting it for two hours, was that I found the infusion room a great place for chatting with other cancer patients and experienced onc nurses. I made a lot of connections with other women in there!
NOw, I am going to be off Xgeva for awhile to see if it is what is causing me alot of skin issues-severe itching, rash and red bumps. I found out it has a half life of about 29 days, alot less than Zometa.
I figure I am in this for the long haul and I suspect that in the long run it probably doesn't matter (in terms of bone health) which we are on. Also, I have known several women who developed ONJ and for most of them it hasn't been as bad as our minds had thought it would be. It's too bad that medical decisions have to be made based on cost/price, I could go on and on about how much money has impacted national economies and our lives, but I will save that for other on line groups, lol.
I will add that I have not broken any bones due to cancer or cancer treatment. I did break my left ankle in a major fall on the ice, but it would have happened without cancer.
We usually don't die with bone mets only, so that is very good news for those of us with bone mets only.
I have been to a dermatologist a few times for the itching (severe, isn't it?) and hard patches, on my legs, hands, and when it is at its worst, face (face masks were helpful in hidng it on my face, but exacerbated it). They put me on a prescription ointment that they swear works. It is not the usual cortisone ointment. My oncologist at first thought I should go off Xgeva because of "quality of life." It was working for me, and I found itching tolerable, but she took me off anyway. Now, getting Xgeva every three months, and with the ointments, it is going pretty well. -- Xgeva was approved in 2010.
I was on Xgeva monthly injections for four and a half years and it was suggested I switch to Zometa every three months because Xgeva should not be taken more than five years. Then I went to dentist and X-rays found infection in my canine tooth. Took antibiotics and got root canal done. Now not sure if I should continue to get Zometa. Hopefully no more dental issues arise but will be getting dental checks and cleaning every three months. They say these drugs can stay in your system for several years!
I have been on Xgeva for 3 years. It causes dental problems also. Like you, I got infections. Dentist specializing in oncology gave me an antibiotic mouth wash and had me put it between infected teeth with a tiny brush. Now I am cleared to go back on Xgeva, tg. She said I have a lot of dental work and cannot eat crunch foods, like raw carrots (something I ate daily) and nuts (also daily). Have to preserve what I have in my mouth, and bisphosponates can cause tooth and jaw problems. Odd that they strengthen other bones, but weaken those in the jaw and mouth. This onc dentist said Xgeva stays in your system 10 years!
Hello! Not sure why you’re on monthly Xgeva. My oncologist said that this frequency could lead to brittle bones and risk of bone breaks. I’m getting the injection every three months. You may want to ask about this. God bless you! 💗💗
Linda
Did you change to every three months or did you start with xgeva every month?
Yes, received monthly injection for about six months; and then oncologist changed schedule to 3–month injections.
I have been on both. I was getting Zometa infusions once a year until I was diagnosed with MBC this last November. My Onc switched to every month. My new Onc who I started seeing in February said I could switch to Xgeva since I had been on Zometa for five years. I had to really fight for Xgeva with my insurance but they finally approved it. I love getting a shot in my arm compared to an hour long infusion. I believe they have similar long term side effects but so far, I have not had any (jaw issues).
Allison
Hello! My experience has been with zometa…and my eyes glazed over when I started reading about the differences between Zometa and Xgeva. Zometa is older so a more cost effective choice for the insurance coverage. However there is also a reason surrounding the level of blood calcium in the patient with Zometa being the best choice if the level is too low. There are more differences but one that is evident is that Zometa allows for moving to every three month infusions after a year of monthly. I wish you well and that you continue to improve on your prescribed meds. It’s a journey and it’s all about smoothing out the bumps for as long as possible.🥰
I tried Zometa infusion once. For the next month, I felt dreadful, just no energy, off somehow. Oncologist switched me to Xgeva injections monthly. That was better but I got severe eczema. After 6 months, she figured the level of Xgeva (long half life) in my body was sufficient to go to monthly. Still get eczema, but it is minor now.
Do you mean that you were switched to every three months? Your message said monthly switch. Not sure
Yes! Switched from monthly to every three months.
What is interesting is, I also had a skin reaction aft er my first treatment of xgeva. I was not sure which drug created it. But, it was bizarre! I looked like a lizard! My chest, back, arms and upper legs all had a thick overlapping skin rash that looked exactly like a lizard. It took several weeks to clear up and eventually all peeled off. VERY weird. I never got it again. Now I am having some hot flashes, not sure at 71 which drug is creating that!
meant after 6 months monthly, went to every 3 months
Hi, just wanted to add in my experience. I’m 6 years in with bone Mets from the beginning of diagnosis. They put me on Xgeva, getting the shot every month for two years. Since then it’s been every three months. My docs said something about once you’ve been on Xgeva for two years you no longer need it that often. Hope that helps the discussion. Take care
I have been getting xgeva shots monthly for 3 years. No side effects.
I first had Zometa, which is an infusion. I fainted about 36 hrs after it. Xgeva is an injection and I have it every 3 months. I do not get any side effects from it.
All I can speak to is my experience. When I was first diagnosed with Stage IV, I took Xgeva every 3 months. Doc wanted every month, but I resisted. Now I'm on every month and have been for several years. I get a little achey sometimes, but no terrible side effects. Only real thing to be concerned about is any mouth or gum surgery and possible complications. You'd want to stop it prior. You probably know about that. I didn't read all the responses, but hopefully this helps or backs up someone elses comments. All the best to you. I'd say the advantage of Xgeva is that it's just a shot, not an infusion.
I have been on zometa for a year now. I get it every three months. My first two infusions of it I ran a fever and had body aches. I now take Benadryl and Tylenol before I get the infusion, and the past two infusions I have not had a fever, but I am still achy a few days after. I also stop my vitamin D a day before the infusion and I don’t take it the day of. Hope this helps.
Why stopping the vitamin D the day before or after?
I had read somewhere that vitamin D and bisphosphonate‘s shouldn’t be taken within a few hours of each other. I think I read their only needs to be a four hour(?) time span between vitamin D and a biosphosphate. So I definitely do not take it the day of my infusion, as I would have my infusions in the morning and that’s when I would take my vitamin D, (I never remember to take any vitamins in the evening). Stopping the day before it’s just overkill on my part!
thanks ill check it out
I have taken both… zometa over 15 years ago… now on Xgeva snd going fine. I love the shots. I don’t feel like chemo in my arm.
I have no problems with Xcheva. I have been on it 5 years now. I was told by a specialist that the bones seem “to have lots if problems “ if xcheva is stopped once a person has been on it. I did not ask why since stopping it not something i wish to do.
Looks like punned states spontaneous vertebrae fractures a few months after stopping. UghGuess we are not doing that!!
Pub Med
Hi and also wanted to add that I was just about to get my first zometa infusion…. The IV was in! I made a call and found out that Xgeva ( the shot) was going to be $1100 out of pocket( vs free for zometa) and so I asked them to stop the IV which reminded me of the dark times of being on chemo 16 years ago… and we got the xgeva. It was worth it for me cuz I love on and island in NZ and could get the shot at my local GPs… so worth it to me. Now I am in the USA and have health insurance… was surprised thst so far my Ibrance faslodex and Xgeva have been free! I must have picked the right insurance( Tufts HMO)
Where are you in the states? Funny, but when they wanted to give me the xgeva first time, I saw how much Medicare was billed for it and stated that it was not covered. Soooo, when the nurse said she was giving it to me, I said no way until it is approved, if not no way! As they billed the insurance company $42,000 the shot. Kiddding right??!! Anyway, your point was interesting and it seems that when we protest enough, they come through. I will have to keep that in mind!! Maybe in the end that the docs and hospitals really want to keep us alive as long as possible so their number look good. HAHAHA Do we care??!!
Sometimes when I am in pain I think why are they keeping us around longer just to suffer but then I have really great days with my best friends… like today. Guess we have to take the good with the bad.
I live outside of Washington, D.C. Where do you live now in the states?
I’m in Plymouth MA which is 35 miles south of Boston… recently left my home in Auckland NZ to be near my family… and now decided to stay so will sell my house in nz without being able to go back… sad to have to miss all my friends. It is tough living two different worlds
Are you being treated at Dana Farber?
And then there is keeping us around so everyone makes a ton of more money? Okay with us at this point, sad to say!
I’ve been in Zometa for almost 4 years. Initially I was on having infusions monthly and for the last 2 years, I have been having quarterly infusions. I’ve not had any problems, although I may have some bone pain the evening or day after the infusions. I wish you the best.
Did you have any blood pressure problems or heart racing on it?
thanks for reply morty87. Makes me feel a bit better if I have to take that drug. Had you been on any of the oral osteoporosis meds in your past life?
No other meds in my past life for osteoporosis. My MBC was discovered when I had a skiing accident and complained of severe back pain. Sadly it took about a year before I was treated for the initial cause. I jumped through hoops trying to get relief before a neurologist discovered the lesion on my spine. I’ve done pretty well since diagnosis in Oct 2017. I’m on Ibrance, Letrozole and quarterly Zometa infusions.
What do you do fir nerve pain from spine mbc
I had a complete removal of the vertebrae with the lesion. The neurologist commented that it was the consistency of butter! With a new plate and 9 screws in my back, I am basically pain free other than basic arthritis as I was an athlete. Naproxen works and I have Hydrocodone and Oxy if needed. I’m happy to report that heavy pain meds are t needed.
Most pain meds don't really work for me. So I currently take none of them. But, something will be coming in the future. So a neurosurgeon did your surgery, which makes all the sense in the world because of the nerves. When was that done in your journey of MBC and which vertebra?
Lesion at L1, fusion with T11 and T12. They removed the L1 vertebrae and placed a plate and 9 screws in my back. I spent nearly a month in the hospital as I had to learn how to walk again. I was sent home with a hospital bed and PT. Looking back it seems horrible that I went through this, but my family was so supportive. We had a home health nurse come and sit with me during the day so my husband could go to work. I was a huge fall risk.
As for meds - I really don't take any for pain. I have the regular aches and pains, but the pain that I had in my back due to the lesion and the 2 compressed fractures is no longer there. Things are pretty good. I did have radiation on my spine and hip and Gamma Knife for a small spot on my brain. That is likely the most frightening thing I have gone through as my head (plastic shell) was literally screwed into a board so I could not move during the surgery.
whatever you did…make sure you don’t get too much of it. After 6 years on one and then the other, I got ONJ. It’s not all that rate as a side effect. We get higher doses than people with osteoporosis.
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