So frustrated this morning, one of my back teeth cracked while I was eating breakfast. I was at the dentist a week ago and told him I was on Xgeva and my tooth hurt.
I am scared I have that stupid jaw problem that is a side effect and it is blowing my otherwise calm outlook.
I have my pre-appointment blood draw this morning so I will try to sneak in and see my doc’s nurse before I call my dentist.
Just hate these unexpected bumps in the road.
Has anyone had tooth problems on Xgeva? Any advice?
Hi , I’m on Zometa which is similar , I had to have root canal treatment done and a crown put in after . No problems at all . I think it’s extractions that cause the problems .
Thank you for responding- I need to stay off Google when I’m stressed out
I had not been to the dentist in two and a half years, recently got dental insurance. My teeth are falling apart, I mean literally falling apart. Since I am on Tamoxifen I can have all the dental work I need to have done. I found a dentist in my insurance network that sedates people who get nervous about going to the dentist. The older I get the more I feel like a baby about going to the dentist. Since I will be sedated when he works on me, he will alot in one visit, cutting back the number of visits.
Don’t we have enough stress without dentists?
My dentist is married to a high school friend and she works there with him, it doesn’t help my stress level now that they/she knows I have cancer as I was trying to keep a tight circle. Then my helpful biz partner said “just chew on the other side” 😡
Update: so doc says no oral surgery within 2 months of last Xgeva shot but I can have it capped today to hold me over AND..... got my bloodwork back and my CEA is now a normal 2.2 and my CA15 did another dramatic drop from 1992 to 629 🎉🎉🎉 Yay Xeloda!
So happy that Xeloda is working for you🙏
I am finally back to my initial diagnosis CA15 levels after fiddling around with treatments for almost 2 years. We finally found the answer for me with this drug and I am thrilled.
So happy to hear Xeloda is working!
That's great news. 😃
I am Soooooooo happy for you C-E-L-E-B-R-A-T-E
Thank you God is good 🙏
How long were you on xgeva?
I’ve been on Xgeva since October 2020 was every 4 weeks now every 12 weeks because my calcium levels were going down
Glad you have some great news too. I am having dental checks every 12 weeks in UK. My dentist has been amazing, suggesting more frequent visits for checks and cleaning them even in this COVID since Xmas and trying to nip issues in the bud on Xgeva monthly injections.Celebrate your good news and hope you are not in too much pain with the tooth nothing worse.Debra xxx
Thanks! I got a little cap on my 🦷 to hold me over until I can get it properly removed. It wasn’t as painful as just strange feeling like a loose tooth.
Hi I'm on Zometa and I had to have a molar removed as it was decaying. I got seen rather quickly, the only stipulation was that I couldn't have Zometa for 8 weeks after the op but the dentist said I could start Zometa after 2 weeks as I'd already missed a dose previously due to the tooth ache. I've had no problems since with my tooth, hope this helps x
Yes big help thank you! You guys are the best.
I've been on Zometa for a few years and now Xgeva without dental issues. I'm a long termer (17 years), gone to several bc and mbc conferences and have met a few women with ONJ. One of them had repeated infections in her mouth and her dental school specialist suggested she use Arm and Hammer Peroxicare toothpaste and Listerine original mouth wash. That stopped her infections. My onc told me early on that before any "invasive" dental work is done, we should be off the bone med for 3 months and then 3 months afterward. I'd already had a tooth pulled before she told me that, and had no problems, but that was very early on and I had had only 2 or 3 Zometa infusions before the tooth was pulled. I moved my dental check ups from every six months to every four months for a few years but being without problems, I've gone back to every six months. I had to have a bridge replaced a couple of years ago, and went off Xgeva for 3 months before and after and had no problems. Another thing my onc told me early on was that people with a long history of regular dental care are less likely to get ONJ than those who haven't. ONJ is usually/always (? not sure which) in the mandible, the lower jaw. 17 years ago, my dentist had never heard of these bone met drugs having dental issues but now my dentist has been to more than one training session about them. Others here have said that they've been told to be off the bone med for shorter periods of time than 3 months. Maybe that is the new recommendation.
Thank you for the response. I got a repair done and my oncologist wants me to wait at least another month before I get the tooth extracted and replaced. Xgeva is on hold until this is all done. The tooth is on my lower right side where I already have a weird jaw thing so that’s why I got so freaked out. My dentist won’t do the work I will go to an endodontist who specializes in this.
Going to an endodontist is a great plan! They tend to be quite up to date about our dental issues. I hope it goes smoothly! All these issues we have to deal with besides the cancer itself can be stressful and sometimes very confusing, too. Sending cyberhugs and prayers.....
Thank you 🙏❤️
I am on Xgeva every 3 months and Xeloda. Sorry about the molar issue you sound like your doing everything possible. The antibiotics plus the specialist are a good decision it sounds like you have under control. How long are you on Xeloda I’m hoping I can be on a longtime stable but last scan showed slight upwards on bone Mets and liver The CA ‘s oncologist was not concerned and called this stable. Had you had this happen while they were trending down?
I am on my fifth round of Xeloda and it is the first thing that has even began to touch my CA15 markers. I have my appointment on Monday and will see the rest of my lab results. My doc doesn’t change meds or order a scan unless there is a trend or a new problem. I know the primary tumor I have in the area between my breast and armpit is no longer something I can find or feel, my bones hurt about the same or less (my bone mets are everywhere so I don’t know what is old age or mets), my lung mets cleared completely while on Ibrance. Liver mets are why we changed meds so we haven’t really discussed them or scheduled another scan yet. Sorry I’m. It much help, I’m just in a place where I am happy not to change meds again because next course is probably in chemo. 🙏❤️
Same here like I said earlier I hope it lasts a longtime
I have the jaw problem with Xgeva. I had a bone grow in my mouth and had to have it removed. I had been taking the Xgeva shot for 4 years and had a tooth pulled which never healed. I was going to my dentist on a regular basis and they would clean that area where the tooth was pulled and ask me if it hurt. It never did because of my pain meds. Finally it got so bad and then the bone growing out of the roof of my mouth I went to an Oral Surgeon. Bone is gone now with 4 other teeth and I had to have 6 weeks of IV antibiotics I better but my teeth are very weak.
Yikes! This is what I feared. I am going to ask Doc on Monday about a round of antibiotics. Hugs to you for going through this.
That’s probably a good idea. I was on just regular antibiotics before the IV ones.
I agree with Norma1959.
I've been on Xgeva for 3 1/2 years. Medical reviews have indicated when on denosumab, extractions are dangerous, not recommended and will never heal.
That says it all.
I've been waiting over 6 months for my state insurance to come to terms that I can not have teeth extracted.
In the meantime, dental damage to other teeth is occurring and increasing.
So I will need the state insurance to cover more then just my appeal for 2 root canals.
They informed my oncologist that her request for an expedited decision was not warranted.
Well, it's a miracle I'm able to hold on w/out pain as I avoid watching my 2 front teeth chip away and sores inside the right side my mouth flare up from having to chew on that side.
MBC means nothing to Virginia's Department of Medical Assistant Services.
I would say, consider yourself blessed that you can have the dental work done.
Extractions for MBC patients on Xgeva will in fact cause them to die far to early from not being able to eat from the holes created by the extraction never healing.
Lets not forget Extractions while on denosumab also runs a high risk for your jaw fracturing.
Here is the medical review abstract for the 7 page article that my oncologist sent to the state: Medication-related osteonecrosis of the jaw in patients with cancer
uptodate.com/contents/medic...
Wow thank you for this amazing information. I am sorry that your teeth are a trouble. Can you stop Xgeva? Take a break from it? Now I’m worried that my other teeth will follow the one that cracked. I’m glad I have my onc tomorrow so I can ask about this.
Xoxoxoxo
I saw the oral surgeon MD DDS and he said no way should that tooth be extracted that I should have a root canal and have the tooth shaved off and rounded above the gum. So seeing endodontist next week
Great news. I'm so glad your oral surgeon MD DDS was well informed. In the bigger picture his professional advice which appears to be based on real knowledge, is extending your life.
Thanks for keeping me informed.
I will be sharing the information with my oncologist and endodontist, when I eventually here from the state insurance.
Please let me know your endodontist's take on how they plan to proceed.
I would imagine it will take planning since your gums are sensitive and sores develop easily as a side effect of your MBC medication.
Ask your oncologist to print out that medical review for you.Can I take a break from Xgeva?
You couldn't pay me enough money to stop taking Xgeva.
My MBC is de nova , which means it's the first diagnosis I have ever received for Breast Cancer.
The cancer is solely in my bones and the tumor in my breast is nothing but a speck if that , it's 0.7cm x 0.6cm x 0.7cm. That's smaller then a speck.
The pain, stiffness and lack of mobility I experience a week before my monthly Xgeva shot is debilitating beyond words.
I live alone and I have no support from any family or friends.
Mobility without pain is imperative for living my life for at least the next 20 or more years.
I love life and I'll continue doing all I can to stay healthy, strong and positive.
Good luck with holding on to your teeth.
Here is a great toothpaste to use that's fluoride free:
Kiss My Face, Triple Action Toothpaste with Tea Tree Oil, Xylitol & Aloe, Fluoride Free, Cool Mint Gel
"No support from family or friends" and "I love life." Good for you! I feel sorry for myself when I think about my shrinking support, but mostly I am cheerful. You are a role model.
I have found support in the most unusual places. Like certain inspirational creative Youtube folks.
One of my favorites is a wonderful woman living in Mass. who is a chiropractor and astrologer living with her husband and both care taking her almost 101 yr. old Mom.
She records talking about all kinds of things while showing the progress of her garden every morning. Here is her video for today:
Mine was de nova too.. and I don’t want to stop taking Xgeva either - turns out my oncologist was pretty emphatic about that too. He says absolutely NO IMPLANT it will never heal. So, remove the tooth if you have to but fill the gap with a bridge. I’m cool with that no one will see it and I’m beyond caring about looks.
Aside from that - you have Our support here and our 🙏 thank you for your response.
I can't believe he said "So, remove the tooth if you have to but fill the gap with a bridge." You can't take that risk of your jaw fracturing or if it won't heal with the implant it certainly won't heal with removal and bridge. If you ever get to read the medical review , it will scare the begebees out of you. When I read the part about an extraction never healing when on Xgeva , I freaked out.
He wasn’t thrilled about extraction but the tooth is dead and leaving it to rot doesn’t sound appealing either. I have a consult with and oral surgeon who is an MD and DDS so one hopes he will have read this but I will bring it along
Please keep me posted. I'm extremely interested to hear his opinion "after he reads" the medical review.I'll keep my fingers crossed and a candle burning for a positive dental resolution.
Appointment is June 9
Ok June 9th, sorry they are making you wait 3 weeks for the serious condition your tooth is in, sending positive thoughts that you can weather thru 3 weeks.
The support and prayers mean a whole lot!!
Just checking in - how are you doing with your dental challenges?
Seeing an oral surgeon today for an evaluation "only". I was up until 3 am nervous about the visit due to the highly contagious omicron virus. I haven't been sick in 15 years or more and I'll be damm if this over due visit is going to invade my immunity having all my vaccines. His assistant was very kind and helpful by providing me with their procedure for sterilizing the office.
She reassured me that I will only have my mask off for a second for the dentist to quickly look in my mouth.
It's a typical unfortunate progression of a slow downward spiral from my health insurance denying the 2 root canals I needed 14 months ago.
I will say taking 1000mg of vitamin E is helping tremendously with stabilizing infections.
Taking Xgeva has been dangerously ignored by my states Medicaid healthcare agency when they denied a requested medically necessary dental surgery for the recommended 2 root canals 14 months ago.
This fact is supported by the following:
"the most critical factor for limiting the risk of developing MRONJ is through optimizing patients’ oral health prior to initiating therapy. It is essential to incorporate dentists and dental hygienists in the multidisciplinary care of these at-risk patients.27 Dental screening and appropriate oral care prior to initiating and during antiresorptive and antiangiogenic therapy lowered the risk of ONJ by 50%.28,29,30 These preventive efforts would be equivalent to preparing a patient before cardiac surgery or before initiating radiation therapy for head and neck cancers. Engaging health care providers to make preventive dental care a routine part of pretreatment management should be a national priority for both overall good clinical practice and cost-effective management." - nature.com/articles/s41413-...
I have the development of a new sore on the upper my right top of mouth in addition to the abscess over one of my 2 cracked teeth that needed the root canal, fortunately the size has been reduced by taking daily vitamin E.
That is the mouth sore update, on the other hand .... the rapid tooth deterioration to my 3 top front teeth and the 2 teeth that were denied the root canal is serious.
At this point going off Xgeva is NOT an option. Research indicates going off after being on Xgeva for 4 years can cause bone fractures.
With my 70 pound weight gain from my cancer medications I'm now 275 at 6'4".
Need I say more?
Pray for an evaluation of hope and support with suggestions for not pharmaceutical solutions.
Now the stress continues as I have a continued court date tomorrow Because... the attorney representing the healthcare agency is attempting to throw my notice for appeal petition out of court for filing 1 day late.
Did I mention, I'm pro se .. representing myself because I'm surviving below the poverty level?
Yep, 1 day late due to the calendar month having 31 days and not 30.
You see she has no case to right a winning brief, since the "said" healthcare agency's denial was for a request my oncologist never made .... extractions ?! claiming "not covered".
My oncologist's request was a medically necessary dental surgery for 2 root canals and 2 crowns, stating I CAN NOT have extractions due to my bone cancer medication.
To top it off, the Judge is basically continued the case to tomorrow so the healthcare atty. can locate additional evidence to support my filing 1 day late.
The Judge then commented to me sitting alone in the huge court room, that I should be grateful for the attorney who substituted for the initial attorney who gave 3 day notice she could not be there due to a family emergency.
He also said I should be grateful to the court for not canceling the date.
This is how you're treated when you don't have an attorney and the request for a transcriber was denied.
That's right you heard it hear first..
As a terminal breast cancer patient, you should be grateful to the attorney representing the healthcare agency who placed your life at risk for recklessly denying a request that was never made.
I would say a miracle is in order, considering I am still enduring ongoing family tragedies from narcissistic siblings avoiding accountability for serious reasons.
Apparently, no one seems to address how my brother an attorney has intentionally prevented me from seeing or even knowing where my only child is for over 10 years as her only living parent.
My beautiful child on the Autism Spectrum that I raised alone with my Mom's help after her father's tragic death when she was 1 now she is now 29.
We can thank this court for that as well and we can thank this court for allowing my siblings to place themselves above the law forcing me to live in poverty.
That is why prayers and a miracle are in order, for me and all the other women with MBC who are not provided with the quality healthcare we all deserve from well informed medicaid healthcare agencies.
That's my dental update and the varied levels of stress that compounds my dental update, hope you're doing well.
Oh well, I am beyond words. This is just too much for one person to endure. Please know that I am praying my heart out for you.
Thank you for your prayers and continue sending them because this is not over.
Filing my appeal petition with the circuit courts on Sept. 3rd was not 30 days from the healthcare agency filing my notice of appeal letter on August 3rd., because August had 31 days. It's math for the attorneys and the law.
My bad, I should have not listened to the Division Director of Appeals for the healthcare agency who informed me my deadline to file my petition with the court was the 3rd rather then the 2nd.
Secondly, no one informed me I had to send the healthcare agency a copy of my court filed appeal petition, I was under the impression the court did that.
No one with the courts informed me to send them a copy the legal aid outside my area that generously provided a sample petition for me to follow never informed me and most significantly the Division Director of Appeals for the Medicaid healthcare agency never said a word, silent.
Well, the court did send the Medicaid healthcare agency my amended petition I filed on the 8th of Sept. but for some weird reason they did not send the healthcare agency my first petition filed on the 3rd.
And the law states Pro se cannot file an amended petition.
What we have here based on substantial evidence is a corrupt Medicaid healthcare agency.
Who in fact, mislead me thru their silence, and yes it was intentional since they have no case.
All the documents clearly support they were caught by me with their hands in a cookie jar.
While I sat here waiting for a reply from the court for 2 months on my petition I filed the Director of the Healthcare Appeal Division sat silently knowing that my appeal would expose how this Medicaid healthcare agency knows ZERO about Metastatic Breast Cancer and therefore know ZERO about all the specific healthcare services each MBC patient may need, other then providing medication.
Well medication does not remedy everything as you well know.
While I waited for a reply/decision from the courts, every week I was contacting attorneys to help, sadly no one would help and my local legal aid said "we can't help you!".
Now the oral surgeon I saw yesterday informed me he that he told the medicaid healthcare agency dentist who contacted him, that I needed an evaluation from a skilled endodontist because that would be the dental professional providing the treatment.
I did learn that I do not have to go off of Xgeva since I have been on it for 4 years.
That a root canal and repair to the chipped teeth can all be done without touching the gums to avoid creating any further infection.
That the sooner I receive this dental treatment the sooner the infection I do have can heal.
If I do not have this dental work done or it is delayed for too much longer then the 14 months it has already been, then I could be subject to more infections that would lead to osteonecrosis of the jaw (ONJ).
What's left, well I will get the dental work done, however, there needs to be accountability and perhaps it's time to leave contacting personal injury attorney's and contact civil rights attorneys to investigate this Medical healthcare agency.
I do hope others can benefit from my story. Finally, there needs to be more then one Breast Cancer advocate who can provide support across the state they serve and not just one area, which unfortunately is not the area I live in.
Finally, the patient Oncologist needs to be provided with a list of advocates in their patient area of the state who can provide support and locate either, legal aid, Pro Bono or if the case warrants an attorney willing to be paid on contingency.
This is horrific. Where are you located? Does your hospital have any support services? It sounds overwhelming. I pray you find an advocate who can help you in all of this.
I was under the impression I could not say where I'm located on this website since that would identify the Medicaid Healthcare agency. Also my Oncology Ass. social worker said their was nothing she could do to help with my siblings exploiting my daughter on the spectrum.
Our state and many states need to modify the adult guardianship laws to prevent adult children being estranged by their only living parent who has been over 100% there for them and who is supported by all the medical professionals and teachers who worked as a team with parents for their Autism Spectrum child.
My Oncologist was generous with her time as my Appellant Representative for the Healthcare Fair Hearing Appeal.
My update is with Iwasborntodothis.
Thank you so much for your concern, I appreciate the emotional support and your prays are still needed.
Hey whatever happened at the dentist??
I had a root canal using something called wave technology meaning they did the work with pressurized sterile water. They then shaved the remaining tooth down to gum level and put a "filling" on top. We are letting the gum grow over it. I was at the doc today and was able to get back on the Xgeva train because it is healing so well. But no implant tooth allowed, if I get tired of the hole I will have to have a bridge.
I am on Zometa and had a tooth break at gum line. I was told I needed an extraction— so went off Zometa since last summer. In Dec I saw dentist and he told me he could perform an”old school “ technique of building up the tooth and not pulling it. He did the build up and now I’m going to wear Invisalign’s to “pull” that tooth s little lower so they can crown it. So far working ok. Getting Invisalign fir it next week.
Just wanted to mention this alternative to an extraction.
Good luck! Cindi
Xgeva
Xgeva
Xgeva
Wisdom tooth extraction 
