tooth extraction
hello warriors. i saw the gallow's humour thread - love, love, love! what a great idea. today's question is: do any of you fine persons in our category have any experience with tooth extraction? i gots a molar that gots to come out, and am researching because at this moment in time, i don't trust my onco. i did a quick search thru the community topics and found some worrisome posts. i'll be looking forward to reading responses from those much wiser and experienced than i. also - i'd love to hear from anyone who is getting treatment at Kaiser in Southern California. i really want feedback regarding other oncos in this area. namaste all xo
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edge,
What specifically are you worried about regarding an extraction? Are you on a bone strengthener and worried about osteonecrosis of the jaw? What's going on with trust and your mo? Sorry to ask so many questions but the details are important in order to answer you.
I am a Kaiser patient but am in Northern CA. I have also lived with mbc for 10 years after initial treatment. I love their emphasis on wellness (classes, acupuncture, farmers markets, etc.). I also love that all staff are Kaiser employees and communication between any and all providers is seamless. I have never felt constrained by having to stay within the Kaiser system as there are several large campuses within driving distance so my choice of providers is quite large.
If you go to your profile settings, you can make your diagnosis line public. This helps anyone who responds to your post understand your situation better. Take care.
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Hi Edge, I had to have 2 teeth pulled last year. I was told to wait around 3 months from my last shot of denosumab before having them extracted and another 3 months before denosumab afterward. The concern is necrosis of the jaw if you are getting zometa infusions or denosumab injections. Probably the case with any bone strengthener but these seem to be the most common. My mouth healed just fine and I had no problems. (Other than the bill for the extraction - quite painful to the wallet!) Hope this helps you and good luck finding an onco you trust. It is so importnant!
I love the black humor thread too!
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thank you both exbrnxgrl and jobur! i have just made my dx & treatments public, wasn't quite sure how to do.
jobur - 2 teeth! i am so glad you are ok! lol yes the bill will definately make me cry!
exbrnxgrl, excellent questions all. my resposes:
What specifically are you worried about regarding an extraction? since my mets is bone, i'm concerned about any type of invasive work being done on my teeth/jaw for any reason. additionally, i had sepsis June 2021. it was bad but i managed to avoid the ICU; i'm very worried about infection.
Are you on a bone strengthener and worried about osteonecrosis of the jaw? i'm not on a bone strengthener yet, and i saw the term osteonecrosis for the first time yesterday via reading the forums and am mortified!
What's going on with trust and your mo? it's early in the game, but he has made me furious a few times: 1. i had to fight for 2 months to get the biopsy that confirmed the mets - Kaiser like the rest of the medical world has been turned upside down thanks to covid; i asked for his help getting the biopsy scheduled and he did nothing. i got it by filing a grievance and sharing that i had contacted a local news channel. 2. i couldn't get the actual tests results from him for weeks, had to remind him that California Law states the a patient has the right to get medical records within 5 days of requesting in writing. wanted to strangle him. 3. just 2 days ago he contacted me re: my meds refills saying 'i thought you weren't ready to take them?' - how did i get the meds in the 1st place, bozo?! this is no doubt TMI. i'm grateful for Kaiser but this guy is frightening/frustrating. gaaaaahhhhh!
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You should try to get the dental work done before you start the bone strengthening drug. The risk for osteonecrosis comes from these drugs, not from the bone mets
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Your dx line looks fine!
Osteonecrosis of the jaw, ONJ, is a known se of bone strengthenersbut is considered a low incident se. Of course, reading through a bc support forum it may seem common because those folks need support! It’s ugly for sure but it is not an se for most on bone strengtheners. I was on a bone strengthener for 3 years (Aredia which is not used much anymore) and my mo recommended that I stop so I did. If you are worried about infection risk because of bone mets, I think that you have nothing to worry about unless the mets are in your jaw (not likely). I had nasal/sinus surgery last year that involved bone but the fact that I had bone mets was not a concern. As far as the overall infection risk, a discussion with your mo and the dentist should help ease your mind and they may even have you start on a prophylactic course of antibiotics prior to extraction.
Yes, most medical systems have been impacted by COVID and Kaiser is no exception. That being said your doc sounds like someone I would avoid. My first mo was head of the oncology dept (Santa Clara). I’m sure he was competent but I just didn’t click with him. My RO, who was fabulous, set me up with a different mo, also at Santa Clara, and it made a world of difference. After seeing her for 8 years, she moved back to her home country ☹️. She recommended someone who has turned out to be very good (not as much in person contact with her as the change happened during the pandemic). So, check out other MO’s at your facility because I think it’s very important to have full trust and confidence in your mo! Take care
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Olma61 - ok now that's important to know! thank you - i've got more reading/homework to do. 👍👍👍
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Hi Edge -
If you do a search with my name, I have posted many times in different threads regarding osteonecrosis. If you haven't been on a bone strengthener, now is the time to have an extraction.
My extraction came after 10 years of Zometa and was performed 2 years ago by dental surgeons. I am still being monitored for the ONJ and it does not go away. Be very vigilant taking bone strengtheners and look for any minor signs of changes in the mouth, such as sores and ulcers. Infections can be difficult to deal with as well. Worst case scenario is that your jaw can collapse, but catching it early is the key.
Many of those on bone strengtheners want to believe that ONJ doesn't have to be as bad as it sounds, but forewarned is fore-armed.
This group has some wonderful ladies that you can rely on for support. If I've frightened you, some of the others can make more sense of it and have talked me down from the tower LOL.
Now that I've put my foot in my mouth (yes, it'a a pun), I believe you will be fine because you know the right questions to ask.
Love,
Anna
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I do believe that ONJ is certainly as bad as those who contract it say! However, it is a low incident se, about 2.9% are effected. It’s important to be aware and to get any invasive dental work taken care of before starting. Being the recipient of a life threatening complication from port installation I understand how these possible se’s are truly frightening (chances of the complication I experienced? Less than 1%!) but it boils down to the old risk vs reward paradigm. Take care
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My extraction was the day you 1st posted last week. Unfortunately, I took Zometa for 3+ years. Osteonecrosis is NOT rare for those of us on IV bisphosphonate therapy. The spontaneous occurrence rate (without a trigger like invasive dental work) is single digit but multiplies up to 10 times according to my oral surgeon.
The oncologist actually thought I could reduce risk by using a drug holiday. Not true, given the half-life of a decade. With history of extensive bridges and crowns because of congenitally missing lateral incisors, I should have had Xgeva. A switch now is dangerous due to the combined inhibition of bone remodeling.
Implants are contraindicated since the jaw cannot heal properly and they often fail. Taking amoxicillin to ward off infection, I will be fitted with a removable plastic appliance designed to fill the gap. Decay began where a root canal existed, so the only reasonable alternative was to pull the rotten thing…
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And the longer you are on the drug, the higher the risk. The incidence of osteonecrosis increases with each year we stay on the drug
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Olma is correct - a rule of thumb is to figure an additional 1% risk of jaw osteonecrosis for every year taking an IV bisphosphonate. That would be the rate without going through invasive dental work. Xgeva is safer since stopping allows the effects on bone to be reversed. However, insurance may not like paying for it.
Don't be discouraged if a request for authorization is denied. Injectable meds are expensive. When employed as a pharmacist, I helped get approvals on various prescriptions for people. Plus, brand manufacturers frequently have patient assistance programs, not always based on financial need.
Of course, the last thing you want to do when newly diagnosed is challenge your oncologist's protocol for Zometa. Indeed, a decade ago it was a sensible choice since our average survival might have been 5 years or less. Now, with better therapies, we are living long enough to develop oral health concerns!
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thank providence for every single one of you. i know now that i am *super* lucky to have not started the bone strengthener yet. i'm still paranoid af because i had sepsis last summer - that is magnifying my concern 100 times. ugh
amontro - LOL foot in mouth ha ha i like that. no you *specifically* did not frighten me, need i say more!
vlnrph - tooth extraction the same day i posted NOOOOOO! oh i am so sorry please tell me how your recovery is going?
olma61 and vlnrph - this is huge: "...the longer you are on the drug, the higher the risk. The incidence of osteonecrosis increases with each year we stay on the drug." important to know. is need to take bone strengthener while taking arimidex & Ibrance a foregone conclusion? it seems like it is, making the choice between Zometa and Xgeva seems complicated - one step at a time.
i did run across a post in our community advising us bone mets persons to watch the LBBC 2021 Bone Mets video with Dr. Katherine Weilbaecher and she spoke about dental work at the end of the discussion - she said the same thing: have dental work done prior to taking any bone strengtheners. i need to thank the person who shared that - mets brand new to me, it's hard to know where to start.
again much gratitude to each of you. seeing the dentist tomorrow morning for a consult before yanking that naughty tooth out. SCARED! lol
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EDGE -
I totally agree with VINRPH and OLMA.
The incidence of onj is higher than the statistics they throw at you. Just google onj and you will see many instances of law suits and poor unsuspecting patients that drank the kool aid.
Yes, the longer you are on it, the worse it gets, and yes, you can't just go off it and think it will go away.
After being diagnosed Stage 4 denovo in 2008, I was put on Zometa the next year. They tried to give me the infusions with a longer time in between and I did not feel well with Z. They wouldn't take me off.
It started with a roof ulcer in 2010, and I was taken off Zometa in 2019 because "they didn't know that I was going to live so long", and because "no one else lived long enough on Zometa" to report it.
In 2019, the jaw pain started and it was agonizing for more than a year. I was on Augmentin straight for more than a year because the infection was rampant and painful. There were disagreements about being on Augmentin so often, so long, but infection and pain won. I stopped in 2021.
Finding specialists 2010 and after was difficult, but I think nowadays you'll have better luck.
If you've ever seen the anti-smoking ads where the patient has a jaw missing, chances are lung cancer didn't cause it but a bone strengthener did. I don't see those commercials any more.
My latest surprise was in January 2022 when finally the bone in the center of the roof of my mouth, just popped out! Also, a few months ago, there was a suggestion that I would need a crown for my molar, and I was told it was not a good option.
EDGE - Hang in there! Things seem to be looking better now that there is an awareness. Keep us informed.
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edge of no return, personally I don't see that it's a choice between zometa snd xgeva. Zometa stays in your system for YEARS later possibly causing problems till those years are up. Xgeva is in your system for 6 months.
My jaw started getting sore last July, just after my last xgeva shot. 2 root canals snd 2 crowns later on opposite sides. One side is still sore. Does it require extraction? It wil eventually, I was told. Or is it sore cause the bite is now off and continues to irritate. Is bite off cause bone is moving? Is it onj? Nobody knows but at least now I wouldn't be as concerned about having an extraction.
Good luck ladies
Gailmary
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amontro - after i read your post, i went to bed and didn't come out for a day. it's ok i had ice cream & my kitties in there with me. 😺 went to the dentist and she said we're pulling this thing out right now. to say i was hysterical is an understatement, good news is it came out smoothly, got sutures & a bone graft, did i make a mistake by not prepping prior w antibiotics & by not finding out wth a bone graft even is b4 just letting her do it? ct & bone scans coming up starting next week, now wondering & reading about the following: what role does bone density have here? is it possible to not need bone strengthener at all, how is that determined? etc. etc. regardless, thank you again to all. xo
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I've had bone grafts in preparation for implants it's actually artificial bone that they place so that your jaw can hold the implant tooth but since you aren't planning implants don't be afraid to ask your dentist what the purpose is in your case
As far as not needing bone strengthening drugs they want everyone with bone Mets to have them. They help prevent fractures and I know in the case of xgeva, they think it may actually have some anti tumor action in the bone
I was on Xgeva and I went off it for dental work and so far have not had a problem I was off six months before we extracted the tooth and I successfully completed an implant because it was my front tooth. This is not to say you shouldn't be cautious. Don't be afraid to ask for Xgeva vs zometa either. Another advantage of Xgeva is that it's a shot and zometa is an infusion so more convenient
Good luck and I hope you heal quickly and completely.
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Edge -
My lowly dentist (that's what he calls himself) has told me more about the ups and downs of bone strengtheners that any other medical professional.
He explained that Zometa (in my case) builds like a layer of strong bone around your existing bones. This works if you fall or in a situation that would cause a broken bone, the bone would be stronger. However, it will take a lot longer for the bones to heal.
He also said that, in going off strengtheners, the outside layer of bone starts to collapse. This has been evident in me for years. I have had tiny pieces of bone fall out of my mouth little by little and there are more to come.
Going off Zometa, your bones will be back to "normal" and, if they break, they will not take as long to heal.
Earlier this year, I asked my onc about bone testing and she said that if I get tested and have osteoporosis, I will be taken off my current cancer treatments and have to go to an endocrinologist.
Since I've been on the same treatments since 2008, I have no desire to stop what has been working for me all these years.
I'm so happy that you had your procedure and reported it to us.
If you are still concerned, ask your doctor what I've reported. You are still in the early stages before bone strengtheners can take hold. By the way, I am much older than you, so I have a head start on any osteoporosis!
Sending you my thoughts and prayers.
Love,
Anna
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Edge -
I hope you continue posting. I'd like to hear the follow up to your procedures, scans and bones, in general.
If you need to continue to take bone strengtheners, I'd be interested in that too.
Take care,
Anna
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friends - thank you again so very much for your support. i will engage more with our community and contribute whatever i can to support anyone scared or interested as you have done for me. it's been almost 2 weeks since the tooth came out, both sides of the jaw are sore, stitches come out Monday. i got the full body bone scan (with good results, all stable nothing new) last week and am getting a bone density test this friday. so if i don't yet have osteoporosis, and my bones are in good shape, am i quite mistaken in holding onto this delusion thinking i don't need bone strengtheners "yet"? Anna - reading about the bits of bone coming out of your mouth made my hair stand on end. kudos to your "lowly dentist" for providing such detailed info, please thank him for me. also thank you for encouraging me to continue to engage here. my mets is new to me still and i'm stuck inbetween "oh, you'll be fine, lots of people live for a long time with the new treatments" and "i need to gather a bit fuller of an array of info without drowning". thanks again to each of you.
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Hi All -
I was perusing the threads and the title of this one stood out as I also need to have a tooth extraction and have some concerns. It’s been one year since my de novo diagnosis with bone/liver/other mets and I have not yet started Xgeva as I was told of the potential for ONJ and that I should have all invasive dental work performed first. I saw my dentist soon after my Dx with this info and the only invasive work he recommends is removing a ‘baby’ wisdom tooth. It’s about half the size of a standard wisdom tooth and the only one I have, the other 3 don’t exist. it does not bother me but I recently learned I have a cavity between this wisdom tooth and the one next to it. He says extracting it is the way to go. I held off on scheduling the procedure because I’m taking Ibrance and I didn’t want to take a break so soon after starting it. I’ve also had challenges scheduling the extraction as my dentist is always booked and you have to schedule everything months in advance, so coordinating with my week off Ibrance throws another challenge and the office staff know of my Dx but are not at all accommodating. I was scheduled to have the extraction on March 7th, but a few days prior my ANC was 0.6 and my APN suggested I reschedule the extraction in the event of infection. When I called to reschedule, the next appt that worked with my Ibrance cycles was April 29th, but then I had to take an extra week off to get my ANC up and have to reschedule yet again.
I am also terrified of starting the Xgeva due to concerns of ONJ. I am 42 and had a bone density scan in January. My MO said everything looked normal, so I too am wondering if I *need* to take the Xgeva. I am actually seeing a new MO on the 28th and will ask her. I’m in between MO’s as my previous one left my CC on the first of this month. I received my initial Dx at a local hospital and the MO was proposing Zometa. My current CC recommends Xgeva. I didn’t realize the differences in how these drugs are administered and how long they stay in your bodyand am glad I came across this thread. Thank you all.
Edge - I will let you know what my new MO says about ‘needing’ to start Xgeva now.
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Edge and Sunshine -
I didn't mention that when I found my current dental surgeons one of the first things they did was extract my lower left wisdom tooth. Apparently it's so far back that it doesn't affect the teeth in front of it.
Since then, I developed 2 small pointy bones that have scraped the side of my tongue. That's why I need Augmentin, because it gets inflamed, and lidocaine on gauze to wrap over the area to keep from scraping.
After having said that, last week the 2 pointy bones in the gum under the missing tooth have emerged as one bone, and my gum has been inflamed and scraping on my tongue again.
This bone will dislodge at some point and fall out. It could be next month or next year. I still have a new ulcer in the molar in front of this area with a bone sticking out of that. Talk about waiting for the other shoe to drop.
My upper bicuspid filling and tooth were falling apart. I was asked if I wanted to fill it or remove it. My dental surgeon said not to remove it, it would affect the rest of the teeth. My dentist refilled and did a great job.Edge and Sunshine - I have a lot of respect for you guys being proactive about bone strengtheners. The more you learn ahead of time, the better you are equipped to handle this. Keep asking questions. You never know who might have further knowledge on this topic, even a "lowly" dentist.
As I mentioned a few years ago, I saw an infectious disease specialist to deal with the infection - that's how desperate I was. Moving on from now to the next few weeks, I will be seeing my primary care doctor, then my palliative care doctor (no I'm not ready for hospice), my current dental surgeons, and finally my regular dentist. I'll keep reporting.
Love and blessings to you all,
Anna
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hi Sunshine - welcome and i too am thankful for everyone here who has supported me and will support you too. particularly Anna - my heart aches reading your experience. i was embarrassed at first to ask about my tooth but boy howdy am i glad i did. i get the stitches out monday and oddly, the opposite side of my jaw is super painful. i'm hoping that's just because i'm chewing on that side. or shall i say gumming my soft foods to a pulp. Sunshine - i just started Ibrance at the end of December and didn't break from it for the extraction, but i also didn't have the same concerns that you do. i very much hope your new MO has sound words of wisdom for you regarding bone strengtheners and yes please share if you're up for it! i did my first dexa bone scan this morning and will be interested to see the results will be. and thanks again Anna - i will be much interested in following your updates and sincerely wish for you the best of outcomes.
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hello and guess what tooth friends! i get to have *another* tooth yanked out! woohoo it's the same molar on the opposite side of lower jaw. never had an issue on that side, a week after the first one came out it started hurting to high hell. coincidence or not????? endodontist says coincidence. the dentist i got was not my cup of tea so i want to blame her. got the bone density results (i ordered it, onco didn't even think of it), just beginning/borderline osteopenia. i definitely do not want to take any bone strengtheners until the first of next year - at this moment, that's an arbitrary guess i'm pulling out of the air, until i know any better. still searching our incredible community forums for anyone else taking AI's that delayed getting bone treatments. stupid dentist wouldn't let me keep my own tooth and i feel ripped off because no tooth fairy $. hope all you beautiful souls are doing well.
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I have already posted is on my previous thread "Osteo Necrosis Due to Bone Meds", so here it is again:
As we post back and forth with this topic, my lower left jaw has undergone changes. The two areas where the bones are sticking out are further out in 2 spots. I have been in constant pain for two weeks as the points of the bones are scraping the side of my tongue, and the gums and tongue are staying inflamed because it cannot heal. I'm back on Augmentin and put lidocaine on a piece of gauze to drape it over the area where the bones hit the tongue.
I saw a dental surgeon a few days ago, and she told me "It's good news." Since the bones are sticking out more, it means they will be loosening and fall out at some point. She stressed again that pulling the bones out now would be detrimental to my jaw. Although doctors are worried about me being on Augmentin so often, so long, I have another prescription for it and lidocaine. I use a salt water mouth wash and when I lie down at night, the pain subsides somewhat.
Most of you on this thread are making informed decisions for yourselves. As I said, keep asking questions. I'll be seeing my primary on Tuesday. If she has anything to say (which she won't), I'll post it here.
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Edge, by coincidence I had to have another root canal on opposite side of mouth after pain of first one started. But both teeth also gave me alot of referred pain several teeth away. So far they are okay, though first root canal is hurting still. 3 moths later. Got an sntibiotic last week. It helped.
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amontro - I am sorry to hear you are still in so much pain. I hope you have been able to find some relief since your last post.
edge - have you had the second tooth extracted? I hope it goes/went well.
I saw my new MO on Monday and I have to say I left that appointment feeling much more hopeful than before. She actually listened to all of my questions and was open to exploring all of my questions/suggestions, including holding off on starting Xgeva right now. She said because bone density results were good, she is ok with me waiting. She said I should get 150 minutes of weighted exercise per week - that is is good for strengthening the bones. The ‘pounding’ from walking is really good for this. She also said when I do start Xgeva, she would have me start with a quarterly injection and she would never have anyone on bisphosphonates for more than 5 years.
amontro - this is unrelated, but I see you were diagnosed de novo in 2008, are her2 negative, and are on herceptin. Did you start with herceptin? Have you ever changed treatments or is this your first line? Also - did you have surgery to remove your primary tumor? I hope you don’t mind me asking, but I’ve noticed many de novo women who are her2 negative, started with herceptin, had their primary tumors removed, and seem to have great outcomes and have been living with MBC for over 5 years, many closer to 10, and some longer such as yourself
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Sunshine = Thanks for asking.
When diagnosed in 2008, I started on Herceptin, and I get the infusion every three weeks now. I had a single mastectomy, radiation before that.
Also, I am doing a little better with my mouth. A few weeks ago, it was like knives in my jaw, last week it was like razor blades, and today it's like pins and needles. I stopped the Augmentin 2 days ago because inflammation wasn't too bad. Keeping it clean with warm water and salt, to prevent further flare ups.
I have spoken to a palliative care specialist this past week and she agrees with my choices of treatment. As I usually say, I know what all my medical people are going to say before I see them, but I go anyway. Maybe someday I'll get a surprise diagnoses (all good)!
I'll give you guys a progress report whenever I need to.
Love,
Anna
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amontro, glad to see you’ve had some improvement
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Anna - i too am ~so~ pleased to hear you have had even the tiniest improvement and relief! may i ask what you do to get proper nutrition? that might be a super obvious question but i'm finding it to be tricky - a learning curve no doubt. Sunshine - hallelujah for awesome new MO!!! my other tooth comes out 4/25, oh boy i can hardly wait. i love that my MO didn't once reference osteonecrosis of the jaw until i saw him last week. perhaps his tack is not to overwhelm, who knows. at least he agrees that i'm not going near the bisphosphonates for a good while. also re: your note that MO would never have anyone on bisphosphonates for more than 5 years - another thing i'm learning thanks to the bc community - so what then after that? yikes
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Edge -
I just went for chemo today, and I lost weight - not the way to do it though.
In order to chew less and swallow easier, I rely on eggs, yogurt, cream of wheat, jello, tomato soup, and whatever else is soft.
It's such a conundrum for me. I should be eating more fiber because of my constipation side effects, but chewing roughage (cabbage, cauliflower) is bad for scraping the gums and the tongue. I have to tell you, it keeps me busy and well informed trying to figure out which food I should eat, but Miralax is a big help in place of the roughage.
Even before my diagnoses, I've been taking high-potency vitamins and supplements. Be sure to let your doctor know what you are taking. Most of the time, it doesn't make a difference, but some doctors are "picky".
FYI, if you have to take Augmentin, or any other anitbiotic for any reason, eat some yogurt or take some probiotics so that your digestive system doesn't lose its "flora." Last thing you want is the "gurgles" in the middle of the night.
I'm so happy that you are being mindful about your approach to health. Forewarned is forearmed. Isn't that saying form the Civil Ware era? Now I'm giving away my age.
Blessings,
Anna
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