hey ladies, I am am on ibrance100 , Faslodex and xgeva since December of 2018. Currently on xgeva shut every six months. I need a tooth extractions now! I am very scared of jaw disease. Has anyone done this while on xgeva? Any comments would be appreciated
Thank you
Sima
No but I’m about to. I have Xgeva every three months but the clinic recommended waiting until next year which will be about 5/6 months between shots at which time they’re confident that it should be okay. If it’s not then I will be referred to a maxillo-facial surgeon at the hospital. I’m nervous but the risk is low so I’m keeping that in mind.
Thank you for responding. How they will figure out it is okey or not? I wasn’t aware of maxilla- facial surgeon . Would you be informing me how did it go? Thank you again
It’ll be okay if the gum tissue fills the socket left by the tooth removal.
If on the other hand, the socket isn’t covered, the jaw bone could be exposed. There’s treatment for it but it has to be responded to quickly. Usually with antibiotics to ensure that the exposed bone doesn’t get infected.
It’s a rare complication of bone strengthening medication but it’s still a concern to those of us who have MBC.
The maxillo facial surgeon is a very specialised dental surgeon. I can keep you updated if you’d like to be. I know someone who had a problem but the antibiotics helped tremendously and the gum did heal slowly but she had to stop the use of the bone strengthening medication.
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It is a potential problem but it is also a rare complication. If you’re worried, don’t have the injection close to the tooth extraction. My clinic said five or six months between injections would probably be sufficient but as you have a six month cycle, you could easily get much more time by delaying that mid year injection until the socket is healed.
I am on all of the above medication. I have had 3 tooth implants and an extraction during my time on these drugs and all has been fine. I stopped taking exgeva for 3 months and Ibrance for two weeks prior to treatment. I wish you well.
I am on Clodronate, which is the once a day oral equivalent to Xgeva. I had two teeth extracted prior to and during the Clodronate. I had to stop the Clodronate for two months in total, and also stopped the Kisqali, equivalent to your Iberance, for two week as well. I had a infection during this time which caused my chin to swell to the size of a baseball. This resulted in a longer period off of Clodronate and I had a root canal preformed by a endodontist. Dental hygiene is key during this time and forever after the use of bone strengthening medication. Firstly, it is difficult with a healing socket. I used mouth rinse prescribed by the dentist, and also brushed my surrounding gums and teeth gently. I used a soft rubber brush, much like rubber brushes that you use on your finger when you clean your dogs teeth. A soft baby tooth brush would do the same. It is important to maintain a consistent oral hygiene regime. I go to the the dental hygenist every 4 months, and maintain good tooth brushing and irrigation routines.
Thank you for your detailed response, I really needed and much appreciated. I go for cleaning 3 times a year and brush with electric brush mornings and nights and floss religiously. Thank you again for taking time and sharing your experience. 🙏🙏
Hi Notofu4me. It might be worth your while to go to You Tube and find some videos on the drugs you are taking. Some doctors encourage patients to stop taking the drugs and find natural ways to strength bones. But, of course, if you feel you are getting good care and don't worry then you are doing what is best for you. You daily dental hygiene sounds wonderful. Take care. Happy holidays! Marlene
You have had all positive responses. Now for a negative one -- at least partly. I was getting Xgeva injections much more frequently, so had more of a build up. My old dentist quick pulled a tooth. No problem at all!
But this same dentist had given me two implants and there were big gaps between the implant teeth and my real teeth. He kept saying they would close up, but they didn't. Some time in here I saw a dentist in the oral surgery department who specialized in cancer. She advised me to come back to her frequently for monitoring, gave me an antibiotic mouth wash...Things got worse and I could not get an appointment with her. Couldn't even reach the office. I turned then to the regular dental department and couldn't get an appointment for months. I was staying at the same hospital where I get my cancer treatments because I thought they would be more knowledgeable. Mistake of my life.
Finally I got a massive infection and got an emergency appointment with the periodontist I had been trying to see. He sent me for two root canals. Too late. She couldn't do the root canals because the teeth were already detached. Basically, chunks of my jaw bone had died and detached from the rest of my jaw, around my implants. One involved just one tooth behind the incisor. The other involved three molars. The periodontist had to cut out two pieces of my jaw bone with the teeth attached. I have a denture now, for just those three teeth. I can't have implants or a permanent denture because my jaw bone is still fragile, thin everywhere. The last maxillo-facial dentist said I will probably lose more teeth. Especially in front, they are not supported by adjacent teeth.
So the pulled tooth was nothing, but the infection around the implants did me in. Also, they have no idea how long Xgeva stays in your system. Everyone was guessing. I was off it five months when I had the trouble. The last maxillo-facial dentist I saw said it stays in your bones for years.
so sorry Tammy, I just heard from my oncologist that xgeva stays a long time! But maybe “something” kept it from staying with you-just a guess! Are you on antibiotics? Not being able to get into a dentist or dr when it is so crucial, is so wrong! I am praying for you! God bless you❣️
Oh, this was years ago. I just got my second denture ($3,000). The first one was hard and was damaging my remaining teeth, cost double, and didn't fit after a while. The maxillo-facial prosthodontist who made the first one went on medical leave shortly after, never to return. I thought he was off. Yes, I was on antibiotics. Really, if I had been able to get in to see the first dentist, couldn't I have avoided all this? Maybe not. One of my docs said "just go to the office." I tried. It was during COVID and they wouldn't let me in without an appointment! I should have gone elsewhere. I just thought they wouldn't know about Xgeva. It is hard to get an appointment with a new dentist, also.
It was horrible at first -- the worst thing that happened to me since my diagnosis. Now it seems not so bad -- compared to all the other stuff we got through, the trouble a friend is having with treatment. Just seems like I am one of those old people who lost teeth. I was determined to keep my teeth into old age and was on my way, then Xgeva.
Oh, well.
Thank you for your comprehensive response. I am sorry you went through all this burden. I decided to postpone my extraction to after holidays
🙏💕
Hello Tammy. It makes me sad that you have suffered. I think all those nasty drugs that cause jaw problems should be off the market. There are natural ways to strengthen bones. I wish I could remember the name of the doctor who had a video on You Tube that explained why those drugs are dangerous. I have recently tried to located him but so far - no luck.
I hope you are doing well these days. Happy holidays. Hugs Marlene
They push those drugs on postmenopausal women, at lower doses than for bone mets. I turned those down and was able to address my osteopenia with exercise. It is different when your bones are weak from the aromatase inhibitors and from cancer in your bones. Xgeva was great for me. It cleared up my bone mets. I just have an oncologist I don't communicate well with and I didn't go off it when I should have. Didn't put my foot down hard enough, soon enough, and got blocked by the dentists. It is more about the providers than the medications. I am okay with it now. I have bigger things to worry about with my cancer than a few missing teeth.
Dear Zebra, I am sorry to hear that you are going through these issues. I don't have any advice to give because I refused the drugs. I was too terrified to add more drugs to my already big cocktail of drugs. I asked my dentist about the effect of these drugs and he told me not to do it. That is a few years ago and I am happy that I listened to my dentist. I seem to be okay even though I have osteoporosis.
I try to keep my bones strong with nutrition and even though I have osteoporosis I have not had a break. I am knocking on wood right now. If I fall I might not be so lucky. I am 82 in a few weeks and still feel quite good but my oncologist recently reminded me that life expectancy for my stage four breast cancer is 82 to 84 years. Those words terrified me for a few days but now I am spending time trying to reassure myself that I will live much longer than she expects me to live.
I believe in mind over matter.
I have been on Letrozole and Ibrance for a little over five years. I have been NED for much of that time. But not sure if it suddenly will stop working for me. I still enjoy life and hope that many of us who are given a scary diagnosis will prove the doctors to be wrong. I am wondering if some of you who are taking the drugs to strengthen you bones shouldn't say no to the drugs and explore ways to strengthen you bones through diet and exercise.
I say this - not because I am an expert on anything cancer related but- to my mind - it is not good to be worrying about what the drugs could be doing to our jaw bones. I think we already have enough to worry about without taking additional drugs. If you are debating as to whether it is worth taking these drugs you can ask your dentist.
I wish everyone good luck. Keep up your spirits and tell yourself every day that you are healing. If you do that daily - your brain will help you heal - and you will get well.
I made a new friend recently at an Asian Market in the City near where I live. His name is Michael. He is a clerk who has come recently to Canada from his home in Hong Kong. I asked him to help me locate some dashi powder. He asked me if I was Japanese and I laughed and said no. With my blue eyes and pale skin I didn't look at all Asian. I explained that I had health issues and wanted to make healthy soups. The dear man took time to talk to me about my health. He told me that the most important health medicine in the world is to be happy! Bless his wonderful spirit!
Love and hugs to all you beautiful ladies. Marlene
Thank you for detailed response. I am so thankful to you and this sight. First two years I received xgeva every month then I insisted to reduce it and now I get the shot every six months ! After reading your post. I decided to cut it all together !
Thank you 🙏
Best wishes for your decision. If you can get You tube watch some videos on fasting. My husband and I now fast for 36 hours once a week. Every Monday. We will take a one week break for the holidays but the fasting is really quite wonderful. Not easy to do initially but the side effects make it worth it. We stop eating on Sunday evening by 8:00 pm and then resume eating on Tuesday morning around 8:00 a.m. That creates a 36 hour fast. There are shorter fasts that have positive effects too. My side effects are an increase in energy and a sense of well being. I now walk 20 minutes every morning. I found that a chore before I started fasting. Now it is easy and very rewarding. Early in the morning the ravens are out and about searching for food. They talk to me. It makes me feel calm and part of something bigger than my own problems.
By the way, if you fast you must increase your water in take so you don't get dehydrated. I haven't told my oncologist that I have started fasting but I will probably tell her eventually. I don't want her to jinx my good feelings. It is all still new to me. But I have now done six 36 hour fasts and have only had positive effects.
I am glad you are stopping those drugs. It will make you less worried about your health. I am working really hard on trying to learn how to take care of myself. I wish you the best holiday season and good health in the years ahead. Hugs Marlene
Good for you. Actually I follow intermittent fasting for over 6 years and I am happy about the results. Thank you so much for taking time and responding to me I really appreciate your efforts
It makes me so angry if doctors talk about life expectancy. They actually have no clue. Everyone is completely different!
Thank you Nocillo. I am very heartened that you posted a reply. I also think it is mean spirited of her to remind me of my life expectancy - especially since I have not had any negative effects. My scans are still clear. She should be encouraging me to be positive. Best wishes to you for a happy holiday season and a healing new year! Hugs Marlene
Hi Sima,
I’m sorry to hear that you’re going through those issues.
I was treated with Xgeva monthly for 2years (in addition to Ibrance and letrozole). Then stoped for 3-4 months after my bridge wasn’t stable anymore and needed to be replaced with implants. No dentist wanted to touch me.
I’m being treated in MSKCC and they have a dental department. The dentist explained that Xgeva made a damage forever even though I was off Xgeva for 1year then .
He end up just cutting the teeth not touching anything below the gums. thanks God it was in the back
Yes, osteobecrosis of the jar (ONJ) is a rare complications, but a serious one
Wishing you all the best!
Hey Tolife, I am so sorry xgeva damaged your jaw.
That is the price we’re paying for living! I think my jaw is okey for now. However I’m very scared of extracting my teeth. I guess I’ll wait until holidays is over. Then decide what to do?
Thank you so much and merry Christmas
Oh, I should have gone to MSK dental department, instead of waiting and waiting to get an appointment at Columbia. You got the accurate info I got three years later - the damage is forever. My jaw bone is now so thin that the new guy thinks I will eventually lose more teeth. Unless mbc gets me first!
I am so sorry that you had to go through so much suffering with that ONJ condition. I really don't think the drug makers should be encouraging oncologists to prescribe any type of drug that has those potential side effects. It is criminal in my mind. You should try to get someone in your government to bring up the subject and expose the drug makers. They are putting women at risk who are already suffering. It is so terrible.
There are so many natural ways to keep bones strong. So why are the law makers are allowing drug companies to put vulnerable women in such a risky situation. It makes me so mad. Even if it is rare side effect they should not be prescribing those horrible drugs. I don't even believe it is that rare. I have now heard of quite a few cases of this happening. Even my dentist told me not to take those drugs!
There must be some way of warning women - all women - via the media that this is happening to women who take these so-called bone building drugs. This needs to be made public. It would horrify many women - even ones who are not breast cancer cases. Hopefully, you find additional ways to get your story into the public news media.
All my best to you in the future. Hugs Marlene
Hi Marlene. Although I have true sympathy for everyone who had developed ONJ these drugs (both Xgeva & Zometa) are a necessary part of treatment for many of us that have extensive bone metastases such as myself. It truly is a risk versus benefit discussion with the oncologist at time of diagnosis. From my first infusion of Zometa back in 2018 I had a tremendous reduction in the pain I was experiencing. I have continued on infusions every 3 months since. For me and I am sure many others increasing calcium in our diets or using other natural means would not be enough. With those of us that develop an increase in calcium in our bloodstream as the cancer eats the calcium from our bones and it leaches into our bloodstream these drugs are required. My calcium is always near the high end of normal toward the time my next Zometa infusion is due after being lowered to the low end of normal following the 3 monthly infusion. I truly feel blessed to have these drugs available to us. Calling out pharmaceutical companies that have developed drugs that do exactly what they were marketed for makes no sense. As this is an international forum it may be perceived that this diagnosis (ONJ) is more common but I think it still is rare. Since thankfully those of us with metastatic disease are living longer the drugs keeping us alive are being given for longer periods than the safety of them were ever studied for. It's definitely a balancing act.
So I guess although I respect your opinions and they may be shared by others I feel fortunate to have these drugs available to me. Take care.
so sorry to hear it now more teeth are weak, but I’m too scared to do anything.
Wishing you all the best!
You need to check with your oncologist. They will tell you when it will be safest to do this. Given that you are only doing Xgeva every 6 months, you may be able to do this faster than if you were doing this (or Zometa) quarterly. Again, though, your oncologist needs to be involved in the timing of this.
Fortunately, the risk IS low... yet, you have to be as careful as possible because it is something we face as patients on these drugs. xo
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