I’m crying in fear , A horrible experience at the dentist has had me to stop going 10 years ago. I need work done, I’m on Xgeva now for six months, before that I was on Zometa for three years. Help me , what can I do with my fear and being on Xgeva, also the fear of having to stop to get the work done . I’m shaking and crying with the thought of it all . I’m a dental weakling .
Dental work and Xgeva, I need lots of... - SHARE Metastatic ...
Dental work and Xgeva, I need lots of work done , so scared of dentists to begin with . What to do , so scared 😭. HELP
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Ycats277
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Hi Ycats277!
I certainly have my phobias (!) but fortunately dentistry is just mildly stressful for me...I don't envy your situation!
My limited experience with dentistry while on zometa...for seven years...is that they might have to adjust the treatment plan. E.g. I had to have a tooth pulled...they got the okay from my doc, but they couldn't do an implant due to bone issues...so I have a blank space where a molar and wisdom tooth used to be. NBD, especially because it's not visible...
But if the issue is about possible extractions where it would be visible, I *imagine* (aka making this up?) that they could do a bridge or similar?
Also I had another wisdom tooth that had a cavity which typically would have indicated extraction...but they chose to fill it instead, due to risks from extractions...btw, I'm glad about this! .
But I think you're more concerned about the anxiety/stress itself?
If so, I have a one word response: Xanax.
Great stuff, has gotten me through every scan in spite of my extreme claustrophobia. Enjoy the trip? (not to be dismissive, but it *can* be very trippy and definitely eliminates the stress... 
Take care,
Lynn
Ycats277 in reply to
Lol , I have a bottle right here and I’m afraid to take them , to as you say feel trippy . I’m afraid if I don’t like the feeling I can’t stop it. I have a lot of fears. I am dying to take one. I take Ativan only .5 mg for seven years now twice a day so I don’t even feel it, probably if I stopped it I would feel it but I don’t even know what it’s doing anymore. And I’m wondering if I could take the Xanax with that but I’m assuming I can because it’s the same doctor that gave it to me. My oncologist arm afraid to take it. I don’t know what I’m gonna do with my mouth . Thank you for responding I’m so scared of everything. Elevators I can’t drive in a car with anybody unless I’m driving. I can’t go on a bus or a taxi because I’m not driving. When I was little I had a babysitter who used to turn on the oven and take my hand and touch the outside of it to show me it was hot and she said to tell me that if I didn’t do something she was going to put me in the oven. And then she told me if I told my parents and they didn’t listen but that next night I was going in the oven for sure. She locked me and my sister both in the basement just for a few hours to play but we couldn’t leave if we wanted to. We weren’t being hurt but we were locked in there. We had to knock on the door if we had to go to the bathroom . So I do have problems and of course this cancer doesn’t help. Because that’s something I can’t change so it’s very claustrophobia feeling. I’m a mess.
You might try half a tablet of xanax. A full tablet puts me to sleep but a half just relaxes me. I was told by my dentist that it is only the more invasive procedures that are a risk, like extraction.
I have a history of childhood trauma also--and still keep in touch with my psychologist that helped me figure it out years ago. Please talk with a psychologist if you are not doing so. This cancer journey is so similar to our being victims when we were children. It is very very hard. Drugs can help--but they are not the only answer. The very best to you! Kay
Thanks so kind xx
Make sure u our font t as ke xgeva 3 months before and 3 months after dental work to lessen risk of osteonec r osis. Fantastic can write you a script for low dose Ativan take it 15 to 20 minutes before dental work it should help with the anxiety. When l have dental rork l try to get in a meditative state or just repeat a mantra like prayer or we ord to myself.Good luck. You can do this.
Maybe talk to the dentist about your anxiety and the meds you take see if he's helpful and if your comfortable with him.If you need to switch dentists that's OK. Consider talking to your physician about it. I wish l could help.
I’m sorry to hear you are so anxious when it comes to dentistry, I didn’t until I got cancer. I really hate to say this but I had a terrible time with Xgeva. Yes you definitely need to be off the med for a few months before dental work and then a few months after. Make sure you dentist also know the medicine you have been taking. Make sure if you have any teeth pulled your dentist keeps a very close eye on it and that it healing because mine did not heal! I did go to the dentist on a regular basis but they still didn’t catch that it was not healing. It was that way for a couple years and then the oncologist took me off of Xgeva. After being off Xgeva for 11 months a bone started to grow in the roof of my mouth. When I finally got the bone removed 3 and a half months later I lost 5 other teeth and a lot of bones with no chance of anything going in because I lost so much bone.
I’m sorry I’m sure this makes you probably even more nervous but it’s the truth and you need to know. My smiles was one of my most recognizable features when I was working so yes the cancer has taken more from me. Take care 🤗
Hi
I understand your fears. I've had lots of pain and infection in my teeth. The dentist says I need a root cleaning procedure on one tooth, a filling on a cracked tooth and a tooth extraction.
This is my story:
I took biphosphanates for approximately 6 months 2 years ago. I stopped them when I started to get pain in my jaw. I've never restarted. I'm 3 years from diagnosis (stage 4, HER pos) and ive been on Kadcyla for 32 cycles (3 weekly cycles). I stopped Kadcyla treatment twice. Once for a cataract operation and once for Gamma ray treatment to four mets on my brain.
....
I don't like dental treatment. I'm scared, like you. I'm in the UK. I asked my dentist to refer me to the maxillio facial team at the hospital to get their opinion and also if I do need an extraction to have it done there to get the best expertise in these cases.
The referral has just gone off.
To deal with feeling scared I'm telling myself:
- something has got to be done to stop it getting worse and to give me a better quality of life.
- compared to the time I (hope to) have left in life, having the treatment is a very small piece
- of I keep telling myself I'm scared I'll continue to be scared. The universe brings you what you focus on
I also imagine the day of treatment. Break it down. Walk it through in my mind right to the point of leaving the dentist chair knowing I've had good treatment and now I must let my body heal. Lots of sleep.
I hope my story is helpful in some way.
If I could put the clock back I would never have had biphosphanates. I believe the risks outweigh the benefits.
Much love x
Please go to my profile and read my post about dental work and Xgeva. You can NOT have and extraction, it will not heal. You can have a root canal - not pleasant but they can make you comfortable. Praying for you and your anxiety and I don't want to scare you I want you to be well informed and we had a good series of discussions on my post from last summer. (I feel like I am channelling NOSTONEROCKS 😘
There are dentists who specialize in working with people who have had bad experiences with dentists, are scared of going to the dentists, etc. Seeing a dentist like that might help,or if you live close enough to a dental school seeing a dentist there might help. I'm a long timer with MBC and have been on Zometa and now Xgeva for a total of 18 years. Before my first Zometa infusion my onc asked if I'd had regular on going dental care, and I had. That was before ONJ was recognized as a possible side effect of these meds and I ended up having a lower molar extracted after several months of Zometa. Ironically, the dentist who did the extraction is now the "go to" dentist for patients on these meds. A friend of mine who developed ONJ keep getting infections and that stopped when she was advised to use Arm and Hammer Peroxycare Toothpaste and original formula Listerine, si I superstitiously use those. I believe that the current protocol for our dental care is for us to be off those meds for 3 months before and 3 months after any "invasive" dental work, obviously not possible in some emergencies! I sure hope you can find a way to come to peace with dental work.
hi Stacy. you have had a rough time of it recently and i am sorry you are experiencing this anxiety on top of everything else you are dealing with.
my sister has a huge fear/phobia of dentist and dental care. she never had a bad experience or anything like that. and no one else in our family has this fear. but i guess phobias sometimes have no reasoning. so she avoided the dentist as long as she could but eventually had to go for the sake of her dental health.
as mentioned above, she found a dentist that has a lot of experience with dental phobia. like you, she already takes 0.5mg ativan twice per day so that wasn't going to help her. the dentist gave her a prescription for valium (similar to ativan but a bit stronger....plus she wasn't used to taking it....so it definitely relaxed her). i can't remember if it was 2mg dose or 5mg dose but i can ask her. (or maybe that xanax that you have on hand would do the trick). in addition, she would bring her iPod and earbuds. she would take the valium as soon as she got there and when it was time to sit in the dentist chair, she would put her music on and the earbuds in and would close her eyes. it worked for her. and i am thinking it would work for you.
obviously if you need an extraction, that involves stopping the Xgeva etc but not sure what you need to have done??
your childhood story of your babysitter is very upsetting and i am sure has had longterm effects. if you don't already see a therapist, i think it would be very helpful. i have seen a therapist for years now and i can't imagine i would have made it this far, emotionally, without her! and she/he could help with the mbc stuff as well. i know it was mentioned already and just wanted to agree that i think it is a great idea. hang in there!
thinking of you and sending a BIG hug.....
carole💛
I know we would be friends in the real world thanks for always taking the time to make me feel better . You are one very special person to me . Thanks Carole 🌹
a..very sweet of you Stacy. thank you for that. honestly, just happy that you find me helpful! and yes, i think you are right❤️. and who knows, maybe i'll be joining facebook in my future. not sure i can take another winter cooped up like this without more distraction to keep me from overthinking. but i worry that facebook might make me feel worse about my situation....hmmmm? see, overthinking..lol
hope you are feeling a bit better....
carole💛🌷💛
No Facebook it’s funny, it’s hysterically funny the posts, the jokes, the caring the love. It’s definitely when I’m bored keeps me entertained and busy and I feel like I’m not alone. There’s a Waze people on there that I know. It’s a fun place for me. I’m not trying to convince you, and I don’t work for Facebook lol. I only have 100 friends on there 80 of them I know in person 20 of them I have met like you. And we really get to know each other because we could see pictures and you get to see family and birthday parties and it’s just a lot of fun to get to know somebody like this even though you don’t know them in real life you sure feel like you do . It’s a big step up from a penpal. And I did have a penpal her name was Karen. We lost touch when I was 20 but from when I was a very young girl we wrote at least once a month back-and-forth. People don’t do that anymore because now there’s Facebook. Xxoo Stacy
well you are pretty convincing...lol. my daughter (32) has also been opposed to Facebook which is really unusual for someone her age. but without getting into long, boring details, we both had our reasons. well, she is now a stay at home mom and guess what? yup, she was lonely and she joined Facebook...lol. so now I'm the only one i know who doesn't face. carole😘
Hopefully not for long, I’m trying to convince you and I’m pretty sure your daughter would love it if you were on there. Even when I’m alone all day taking care of my mother the outlet is to jump on there and talk to everybody that I know and joke around and see pictures of what they’re doing where they are. Living vicariously through other peoples lives. Xxoo stacy
I’m sorry for your worries. Fear is fear… I had a bad experience as a child with a dentist. It’s awful. you have no received some excellent advice from these wonderful women. I can only add …try to gain as much knowledge about your options, reach out to your pcp or onc and get names of dentists who specialize in fearful patients, interview them until you find one you trust. Knowledge is power!
Sending you a virtual hug.❤️
Hi Stacy, so sorry that your stressing about your dental treatments. There’s been a whole load of great advice given here, and I hope that this helps you out!I don’t have much to add that hasn’t already been suggested…but…
Have you thought about seeing a therapist? It’s a long term fix that might not help in time now, but might in the future. I have an old friend from university who has had an extreme…and in her case totally irrational….fear of cats. Not big cats like tigers etc, just regular house pets. This has been unfortunate as I have a houseful, and this has kept her from visiting for quite sometime. She lives in the UK and was able to get referred to have free therapy sessions on the nhs which have definitely helped her. She still hasn’t managed to make it over to see me ….due to Covid etc, but I know she can now walk past a cat…and be in the same room as them ….which is a vast improvement for her.
Wishing you all the best, and hoping the dental work goes well and quickly….
The only other thing I can think of is to try to focus on a positive scenario. I know it sounds basic and obvious, but it’s helped me in the past. I only have one child…a son who’s now 18 ….but all those years ago I was very frightened by the idea of child birth. People often have the weird habit of telling a heavily pregnant woman their personal nightmare stories of child birth experiences…..which was the unfortunate case for me…..things like 48 hr labours etc. I did hear of someone I knew though giving birth at that time who had a very easy 40 min labour….and that’s what I focused on.
To cut a long story short…I had a natural birth…with only 20 mins in the labour room, so it worked out. My husband had offered the most stoic opinion at the time, which I didn’t appreciate then but in hindsight was right…. He just said “ your not the first person to give birth and you won’t be the last”…..but then that’s easy for a man to say😀
Take care
Love Zoe x
Thanks Zoe , you know if I could keep that thought in my mind which is rational that everybody goes to the dentist and everybody has to have what I need done and they all get through it and nobody dies from it then it’s rational thoughts. And I’m not stupid. And I’m going to talk myself into the rational way to think of this and get these teeth fixed the proper way and now it’ll be only an hour out of my day when I’m there. And I’ve had worse pain and I can get up and leave if I want to. That’s my biggest problem not being able to leave if I want to. Being in the middle of some kind of thing with my mouth open and I can’t leave. I’m gonna work this out somehow. I’ve got to talk myself out of the fears. Love Stacy
Yup sounds good! Think it’s called positive affirmation or visualization. Also don’t forget to remind yourself how brave you really are!!! FFS you’ve got MBC and you’ve done so well to get to where you are!Best wishes xx
Don't know about the meds but certainly can relate to your fear of the dentist. Try to get over this with some help. I didn't and have always regretted it. Had my teeth pulled instead. Wear dentures and it has made such a difference in my life. Good luck.
Cheers, June S.
I've replied to multiple posts about my experience with ONJ (osteonecrosis of the jaw) related to XGeva. Please avoid extractions at all cost!! DM me if you have questions.Good luck!
Amy
Hi, sorry to hear that you have a terror of visiting the dentist. It’s never nice to have to confront and face anything that frightens you. I wish you inner strength and fortitude. I have been on Denosumab since December, 2020. At the time I had a tooth that was sore, but hadn’t seen a dentist for a while due to Covid and just hoped for the best.
In February, 2021 the tooth (an upper molar) split straight down the middle which was excruciating. As it had completely split there was no option for a root canal. My Oncologist liaised with my dentist and I omitted one dose of Denosumab which I was then on 3 weekly prior to the extraction.
I had the tooth removed at my local dentist surgery and was extremely vigilant with my mouth hygiene (salt rinses) for a week after. The cavity healed up well and over a year later I have had no problems from the extraction.
I realise I may have been lucky to have no complications but also sometimes I think that the people who have had problems are the most likely to raise their hands as they have had such an awful time which is understandable. I just wanted to let you hear of a positive outcome and send my best wishes your way and hope that all goes well for you.
I had been putting off going to the dentist because it was too expensive and I really fear the experience. Anyway I decided to send my dentist an email outlining all my concerns. I received a lovely reply from him and it made all difference! Çheers Claire
That is an awesome idea , thank you . ❤️🌹🙏
I was off Xgeva for three months before I had two teeth extracted and both extractions healed with two weeks.
You’re welcome!
After some bad experiences, I developed a fear of going to the dentist. Luckily I found a dentist who specialized in dental phobia patients. It was really helpful to practice deep muscle relaxation prior to and during the appointments. Listening to calming music was also very helpful. But two things were most important, having trust in the competence of the dentist, and knowing that he would not be upset if I needed a pause in a procedure because I was too anxious.
And also, he once said something that finally made me understand the cause of my phobia. He said that I clearly got upset any time I was not in full control of a process. It was so true that I had to laugh out loud.
You'll manage very well, once you find a good dentist you trust who will work with you and understands your dental phobia.
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