They are switching me from Zo meta-to Xgeva can anyone tell me if they’ve been switched and which one they like better, side effects. I’m scared I’m truly scared, I hate switching medications. I’m hoping that by switching to the Xgeva that my eyes clear up with the tearing and leaking. It’s keeping me homebound. Please tell me your experience with Xgeva and even better if you can compare it to zometa which I have been on 3 years . Great pet scan reports . 🌹thanks
Xgeva versus Zometa HELP PLEASE - SHARE Metastatic ...
Xgeva versus Zometa HELP PLEASE
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Ycats277
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Sorry, I have been on Xgeva since May 2018 and have had the same problem as you from the beginning. I just stopped getting Xgeva injections after reading all the patient information on their website.
Ycats277• in reply to
Why did you stop , what did you read and what will you take instead ? Thank you 🌹❤️
• in reply toYcats277
Too many side effects vs the possible good it does. Discussed with onco & she agreed. Have jaw problems possibly created by Xgeva. Not taking anything in place of right now. Read the entire patient info on their website. Find it via Google for Xgeva.
Ycats277• in reply to
I did I read about the jaw 
I’m sorry 😞 everything scares me I am a big scaredy-cat. I cry all the time and I’m alone taking care of my mother with dementia and Alzheimer’s by myself. She was just diagnosed with lung cancer and I have her on chemotherapy. So now she’s at my cancer doctor I have stage for metastatic breast cancer and she has stage four lung cancer dementia and Alzheimer’s. I don’t stop crying. She was my backbone,My supporter, my best friend who Accompanied me to all my scary appointments and surgeries and now I lost her. She doesn’t even remember I have cancer or she has cancer and she continues to smoke cigarettes. Anyway my life stinks sometimes I wonder why I’ve been go on medication is the end result is going to be the same for everybody in the world anyway. How depressing I am sorry.
Oh my! That’s a lot to bear. I hope you have people you can talk to. Don’t be afraid to reach out for help or to get medication for your (natural) depression. Caring for a sick mom alone would be hard for anyone. Big hug!
Thanks🌹
Oh honey. You've a lot on your plate right now.
Im stage 4. I stopped the bone strengthener because I had problems with a painful jaw. I too read that there is very little benefit but some scary side effects. I've just been on Kadcyla (chemo) for the last year and had some great scan results.
I understand you've always had your mum to turn to in the past. Right now she needs you to switch roles.
For your own sake I'd strongly advise that you seek help from your doctor by way of getting on anti depressants. If you're crying all the time this shows how down you're feeling and that youre probably not in the best frame of mind to think straight/make decisions.
Yes we will all die when treatment options run out. Though with all the new treatments that day, for some, is getting further away. In the meantime we need to think about how best we can take care of our condition. Look after yourself then you'll be in a better position to help your mum.
Stay strong luv and do get to see the doctor soon.
Louise x
Thinking of you. You have a lot to cope with. X
I am sorry to hear what you going thru. Please don't give up. I have cancer stage 4 and I am stable now every day I am grateful to be alive bc I have small girl and its another day that I can be with her. Your mom need you and you need your mom. You can take natural stuffs while you take meds. Yes I know alot doctor said no but I need to control the damage they do with those meds.I take vitamin D, vitamin MK2, COLUSTRUM, TUMERIC, ORGANIC BAKIN SODA, DRINK GREEN JUICE, GINGER. That what I take now but I used to take more!!!! Don't give up!
Ty 🌹
Hello Grebnesie, I'm sorry you are having to deal with so much! Who wouldn't be depressed?! Please look into anti-depressants and a therapist or psychologist to talk with. I know many metastatic breast cancer people who are taking something. Also, I've heard that there are very helpful Alzheimer support group which are probably meeting by zoom.
Good luck and I believe things will get better for you,
Oh my goodness I sure hope so , thank you for your kindness and help . 🌹
Hello. 🌺 I am on xgeva since August 2018 The only one worry from xgeva is the price. It is very expensive for me. 750$ for three months The manufacturer said I don’t qualified 🤷♀️👎
But is it working and do you have side effects ? We’re you ever on zometa ? Can you compare side effects for me please . I’m so afraid 😧
• in reply toYcats277
Ha! My hospital is charging me $8000.00 per injection!
Ycats277• in reply to
Omg you said 750 above . You have to pay 8000 , how , who could ? I have Florida blue and I just Received an approval letter for seven months. I don’t know what happens after that. Do you have insurance? I feel so bad $8000 who could afford that, does your insurance pay for a part of that. You said 750. I could handle 750 but I couldn’t handle 8000.
• in reply toYcats277
My Insurance (2 policies) paid for all of it. The insurance payments are high!😫
Stacy, I see that you are on Florida Blue Insurance, so I am assume you live in Florida. I do too - North Florida. I don't know if this is a state program, but we have Counsel on Aging. It is a program to assist the elderly and in some cases their families too. They have a program that may be helpful for your Mom. They have a daycare program for folks with dementia. It is several days a week. It gives patients a chance to interact with other patients and to participate in a number of activities. You might want to see if there is one near you and what services are available for your Mom. Blessings, Hannah
Maludagui• in reply to
Are you kidding ? What do you plan to do with that invoice? I am struggling to pay my medical bills. I don't see the end
• in reply toMaludagui
My very expensive 2 insurance policies cover it! But now that I've stopped using xgeva, not need!
Ycats277• in reply to
My name is Stacy , I am so scared to start it now with all your horrible side effects and how miserable you are . I’m really scared now . We’re you ever on zometa? I have er/or positive and was stage 2 when diagnosed, 2 years later it spread to my rib . How about you ?
• in reply toYcats277
Stacy, my name is Marjorie. I was never on zometa. (Did you look it up on that website?) I know nothing about it. I started Xgeva (injection every 28 days) in 2018. I have the same MBC as you but stage 4 and to the bone. (Femur-left leg) Had to have a rod (from knee to hip) placed due to tumor not being able to be removed. Scared?? We all are!!😂🤣 I have a sense of humor like nobody's business! After all the crap I've gone thru in the past 6 years, being too scared to try ANYTHING is not an option. I read huge amounts of studies, reports, trials, etc. I try to stay informed on everything possible. And then, I roll the dice. I get advice from all medical individuals like the Nurses, Dr's, Therapists, etc. Then, I make an informed decision about what I feel I need to do for me. Not what somebody else does or did. All our cancers and all our bodies are different in many ways. I can't make an informed decision because somebody else did this or that. I'm sorry you feel scared. But you need to get bust instead of scared. (Sorry, a bit aggressive here) Learn about every aspect of your exact cancer situation. Write down 1000 questions, search for the answers wherever you can. Ask questions. Things like: how is my body going to respond to Xgeva vs. Zometa? What was your purpose for changing me? Because I understand that some people get the same eye situation that I have. What will be the difference? See what I mean? Don't be bashful or afraid. Ask those important questions. Every one of them. It's your body and you need to be doing the driving. 🙏❤😘😂
Ycats277• in reply to
Hi Marjorie, I am stage 4 now , stage 2 when diagnosed, 2015 and 2 years later stage 4 spread to bones , ribs front and back . No I am not strong minded like you . I’m a scaredy-cat. Not proud , I cry all the time . Sorry . I wish I was more like you . I went for the double mastectomy like a champ, I was so dizzy that I couldn’t even walk. I was dizzy from fear. I’m a nut case.
• in reply toYcats277
You have experienced this crap as long as I have, so you aren't a scaredy 🐈! You ARE strong minded or you wouldn't be here now!🤣 I never cry. I just don't feel like it because I think that would mean I'm breakable. And I'm not. It's probably all because I'm older than you. I have gotten "crusty" with age.😁😂 Crusty and funny. What a combination! You are doing fine, Stacy. You just don't realize how strong you really are. Anytime you need me, let me know. ♥️🙏😘
Ycats277• in reply to
I really like you 🌹you are so real and a true heart ♥️ my kind of people . Thank you for your help and so glad I met you .
• in reply toYcats277
Stacy, I found you again! I don't really have the hang of thus website yet! Thanks for the nice note. I'm just a tough ol' chick😂. I do tell the truth-all the time. BTW, here is something I found from a couple of years ago when I was searching for you again. It's about Xgeva. Look for:"jaw issues xgeva/zometa" under the name of LisaT23. 😘♥️
I was on Zometa for 3.5 years and have been on Xgeva for about 1.5. My insurance pays, so I don’t know the cost. Since they are preventative treatments as well as treatments for bone mets, I guess the fact that I haven’t had fractures and my bone mets have reduced means Xgeva is working. Zometa worked too in combination with Ibrance and Letrozole. I haven’t experienced side effects..,but my eyes were teary before I started Xgeva. My best advice is not to assume the worst and to be aware of possible adverse side effects.
Ty 🌹
So you were on zometa and your eyes were teary and then you started Xgeva and they stopped ? Please tell me I’m reading this right . That would be wonderful .
Grebnesie, you have to look this up yourself and see what all the different side effects you personally have. Everybody is different so your side effects might not be like mine. I gave you the website to read and compare for you. Like I said, I have the whole eye thing going on this entire time with Xgeva like you. Just stopped taking it so it's too soon to see any difference. ❤🙏
Ycats277• in reply to
I don’t see where you gave the web site to go to , can you please resend that info . And thank you so much . I know Zo meta-is less expensive I think I read that why don’t you look into that. I was on that for three years and my pet scans are clear. That’s why I don’t understand why they’re taking me off of it. It’s been working wonderful.
• in reply toYcats277
Grebnesie,
rxlist.com/xgeva-side-effec...
Here it is again.
Ycats277• in reply to
I love that site thank you very much I saved it on my desktop. Very informative. Thanks again😘
• in reply toYcats277
All drugs can be found on that site. You can see every what manufacturer reports about their medications just on that 1 site instead of searching different sites (which I have done to confirm that the manufacturer says the same thing). You are welcome! Wishing you the best!❤🙏😘
I took Zometa once and fainted a few hours after. Now I take Xgeva once every 3 months and I am fine with it.
You get xgeva every 3 months??? Hmmm they put me that every single month. I am wondering why? Do you have met in the bone or not?
I don’t get Xgeva yet , I am on zometa for 3 years for metastasis to my rib front and back .
About the 3 months... that question was for the other lady that she said only get the injection every 3 months.
You can try xgeva and then make a decision if you don't feel good just stop.
I only took zometa 2 times and I didn't
Like how I feel and the constipation was terrible, so I told the doctor I am not taking that.
Ok thanks 🙏🌹
Yes, only every three months. I initially had some met to my spine but now, it seems to be gone. I would not want the injection every month anyway since I read here that it can cause severe jaw bone problems.
I'm a long timer with MBC, bone mets, for over 17 years. Was on Zometa for several years and then switched to Xgeva when it became available. Xgeva is given by injection so it is easier and quicker than Zometa. Both have been good for me though turns out that I am allergic to Zometa and had to have several accommodations to get it ( 1/2 dose, pretreatment benedryl and hydrocortisone, extra fluid, longer infusion time). I agree with those who have have mentioned how individual our responses to treatment is. About your tearing eyes--ironically that is often from dry eyes and there are good OTC treatments for that. I have found Systane really helpful.
This is Stacy . I loved your response. All smiles over here 17 years ! Wow , That is fantastic. I am so happy for you 🌹I am just a big baby , I find myself very immature for my age . I cry all the time like a pre teen ., I am not brave like the woman on here . So where do you get the shot . I go once a month for faslodex injections on in each but cheek . Those are long injections, now I will be getting the Xgeva too 😭 but where .? If you don’t mind me asking I would love to know what type of cancer you have and how much treatment other than the extras that you are taking for the 17 years. If you don’t mind sharing if you do that’s fine. Now I’m asking too many questions? Sorry
I have been on Xgeva since about March, 2018. At first I had it once a month and now I take it once every third month as an injection. I have had no side effects. There are very rare instances of jawbone problems; what I did do, to keep an eye on that potentional problem, was to have an X-ray made of my entire teeth and jaw--this can be done at the dentists; there's a circular contraption that rotates around your head while pumping Bach. Painless.
It is stressful changing meds. You are going to change drugs, the symptoms will change.. you will cope with bravery as you have from the beginning. Try not to add worry to your symptoms!
I’m on Xgeva since December of 2020 after being diagnosed with MBC in August 2020. I have no serious side effects. My only warning is jaw problem occurring during dental drilling work but cleanings are ok. I think everything has side effects. If you have something that’s not right tell your dr right away. I guess strengthening my bones is more important then minor side effects. As for your state of mind we are all scared at times. I worry for your constant worry. Cancer loves stress and worry. My primary care physician put me on an antidepressant because she said I have too much on my plate. I also need to care for someone, my 32 year old disabled son. I often neglect myself. It’s easy to neglect us 😢 Distract yourself when possible. I read or do a craft. They have wonderful ideas on Pinterest. I watch old movies on TCM. I say to myself all those actors are dead. No one escapes. I’m reading a book about 9/11. Those people didn’t have a second chance. When I think these thoughts I feel a bit stronger. Little bits of strength goes a long way. Let us know how you do. Hugs. Peggy.
Ty 🌹
We truly are all in this together. Day by Day! ❤️🌹❤️
Yes we are , and you all are my best friends in the world . Thank goodness for this site to bring us all together ❤️
I agree. You can write me anytime or look for me on Facebook. My name is Peggy Codella
And me too , you can look me up too Stacy Eisenberg FLORIDA xx More than happy to be friends off of the sites as well as on the sites . Xxoo
Peggy I’m looking on Fb for you Xxoo Stacy Eisenberg 🌹🥰
I so appreciate your comment. I have been battling Breast cancer since May 2000. In 2015 it metastasized to left pleural membrane and earlier this month it was found in my spine and small nodules to both lungs. I have been strong and positive for so long. Now I'm afraid. Was worried about the Xgeva and your comment has helped me focus better on the Over-all picture and what is most important. This site is such a blessing because of how we support and inspire each other.Thank you, God bless!
I just joined last week and I truly feel so much better talking to you all.
Any time , I have my link to my email so the minute that anybody writes I get an email notification and I go right to it. I have gotten so much help on this site and I only hope that I could be helpful to somebody 24 hours a day. This is a very very hard diagnosis to ever get, when the shock wears away a little, never LOL there becomes lots of questions. Ask away I’ve had cancer now since 2015 and metastatic since 2018. My last pet scan was great 👍🏼
I was switched from zometa to xgeva bc I was feeling very sick and constipation. Xgeva side effects on me was lower my vitamin D and cause extra pain if you get work done in your mouth. My vitamin D is doing fine now bc they give me 50k unit per week and I am okay w bc vitamin D is important for ppl w cancer and regarding mouth work done they just suspend the injection for 3 months if u get a root canal or something invasive in your mouth. They did to me, but the side effects are minimum compara w zometa. I have been on xgeva 2 years.
Yay thank you 🙏 your response help me with another fear as well the dentist . I was afraid to ask that because of all my other issues . I am so glad you feel better 😘 maybe I will too . Thanks so much 🌹
You're welcome. I was feeling like 90 years old bc my cancer spread to my spine. I only get pain if I do physical work or my daughter want me to carry her. Sometimes I forgot I have cancer and do things I should not do and I paid the price later. I was having neck and back pain bc she wanted me to carrier her like baby!!! So I just took some pain killer. I just told her yesterday that I can play in that way anymore bc I am old. 🤣
Wow, you are such a great mom ❤️ That is heartbreaking 💔 she loves you too and will understand 🌹kids adapt better then us . I’m now thinking about you and not me . That’s a real hard one , sending my Admiration to you.🥰
You will get thru, but I suggested you to check some natural supplements bc they will help your immune system to stay strong while your body is dealing with chemo, meds and other things.😊We have to fight until our last breath!
I plan on it . Meeting all of you in this one place knowing that we have things in common and somethings not uncommon just makes instant friendships With very caring people that are dealing with the same thank I think everybody❤️🌹
I was told by my oncologist that I can get my teeth cleaned while getting those monthly xgeva shots but if I have any work done on my teeth she said to tell the dentist to contact her so they can have a plan for the dental. So far no cavities so at least I don’t have to worry about that for now.
Good morning—today is a new day and hope it’s a better one for you, for all of us! I am a care partner for my sister who has MBC and started on Zometa and switched to Xgeva due to stronger side effects on Zometa (flu-like presentation with strong fever and chills and aches). The Xgeva has been better for her with no fevers and tolerable joint/ bone aches. We have met with an endocrinologist to discuss the long term plan and options for bone strengtheners, which was very helpful — a different perspective than shared by her onc. I would recommend making an appointment to see an endocrinologist. All my best to you and to you mom.
Thanks 🌹
Hi Grebnesie........I am so sorry you are going through so much but as others have said, I think you are very strong. Who cares if you feel the need to cry. I'm hoping it makes you feel better - although again as others have said, I'd mention it to my Dr. As for Xgeva, I've been on it since August 2020 for bone mets. I haven't had any particular side effects from it at all, and never had teary eyes. We are all different and you just don't know what will happen until you try it. I was told Xgeva is easier to take as it's a pill?? Also, I was on it monthly for one year, then switched to every 3 months. I think this is the usual way to go, at least it is at my Cancer Centre. Write down the great list of questions someone posted above, and get yourself some answers so you feel better. And we are all here for you too. Hugs to you and your Mom. xoxo
Thank you for all your kind words 🌹❤️
Exgeva has been proven to be better than zometa at preventing bone fractures in people with metastatic breast cancer. I've been taking it for alm,almost, 4 years, l have extensive mets to my skull, spine, ribs, sternum, hips, femur. No bone fractures. I never took zometa. Siddeeffects are mostly aching , stiffness. Wish you the best.
Please be very careful with Xgeva. I had a pulled tooth which the area never healed as well as an extra bone growing in my mouth. Take care. It is scary switching anything.
I've been on it since 2013 with no progression, so I would say that I like it. I have mets to the bones. As has been mentioned, everybody's bodys react differently, so it's hard to say how yours will. I love it that it's not an infusion, and the science says it works a little bit better than Zometa.
i started on xgeva in 2017 when i was diagnosed with stage 4 mbc in my bones. i had no ill effects at all. i was getting a shot every month until 2020, when my onc decided once every three months was enough. i take ibrance and letrozole, get scans every six months, and so far, i'm stable! stayin' alive! 😀
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