Xgeva and dental implants

[Trissh]

Hey Ladies, are any of you on Xgeva who also have dental implants? I have had a few dental implants over the years and have read they may be risk factors for ONJ (osteonecrosis of the jaw) while taking Xgeva. Anyone out there with experience and / or knowledge of an authoritative source of information on the topic? I am in Charlotte NC and haven't had luck finding an oral surgery with this specific experience. --Trish

[Hidden]

I was taking Xgeva and I had problems. It is such a long story and I hate to go into it. It was a real nightmare. I went to a dentist because my Onocologist said he thought I had osteonecrosis. He said I did not have it and that day he made impressions and he was going to pull all of my teeth. I did not go along with him from the start and so I went to a different doctor to get his opinion. I went to an oral Maxofillifacial doctor who forwarded me to a doctor at Emory hospital in Atlanta, Dr. Gary Bouloux. He said I had osteonecrosis and needed to have a titanium bar to replace my jawbone. So we did that on November 16. 2016. It took a year to recover from that but it finally healed. Then I was sent to another dental specialist who built this apparatus to screw into my bones and then he made a partial to fit into that. I felt so much better. I was having to wear a mask and people stared at me and it was so embarrassing. The laugh was on them at the end because Covid came along and everyone had to wear them. The whole experience was a nightmare.

[Andersl in reply to Hidden]

I really feel for you and all you've been through x

[TammyCross in reply to Andersl]

Wow, worse story than mine! I have welcomed masks, too, going through infections and oral surgery. I miss them now.

So glad they were able to replace your jaw bone and you will get teeth, but I know how traumatic that surgery and recovery are. I still get shudders, and I had much less ONJ than you did.

[Andersl]

Hi Trissh

I was on the a different biphosphanate but the risk of ONJ is the same.

I've been told I need 3 teeth extracted. Making the decision to go ahead or not is a dilemma.

I only had 3 injections 2 years ago but I've been told by a Max facial expert that the drug stays in your system for 10 years. I wish I'd never had it.

I had root canal treatment on one tooth. The experience wasn't as bad as I'd thought and the pain from that tooth has resolved. I'm wondering about trying that on the other teeth. The procedure is expensive though... £1000 uk sterling.

We're told in the UK "the risk of ONJ is low'. I ask myself, is it? Or could it be under reported? I also wonder what the specific benefits of biphosphanates are: ie extra survival time ? If so how many months? Better quality of life? In what way?

I think we need more information before we sign up to taking this group of drugs (and others) so that we can truly make an informed decision. That's for the future. For now people like you and I are left having to do our own research whilst suffering extensive pain.

Apologies, I didn't set out to write reams on this but it is a subject close to my heart.

Having worked in cancer research I intend to take my thoughts forward with relevant contacts.

I'd be pleased to know what decisions you make and how you get on.

With very best wishes x

[Trissh in reply to Andersl]

Thanks for your reply Andersl. My implants are years old. I have no active or anticipated dental procedures, but I have decided - at least until I can find advice otherwise from an experienced oral surgeon - that I will hold off on Xgeva. I do have "normal" bone density test results and try to do some weight training every week so hopefully the bones won't deteriorate too badly. I will write again if I have a change or heart or circumstances change. Be well! --Trish

[TammyCross in reply to Trissh]

Good decision! I had Xgeva because I had bone mets. They were long gone when I started refusing Xgeva. Too late. It was still in my system.

Yes, implants are the risk. I had two, old ones. My jaw bone (Mandible) died around them and they had to cut out the dead bone -- which my body was expelling anyway -- and the teeth came with them. The implants were very well embedded in my mandible.

I also had a dentist impulsively pull a tooth while I was on Xgeva. Oncologist freaked out and I was sent to a special oncology dentist. It healed a bit slowly but it was fine. They say no extractions while on Xgeva. That was not the problem: it was the implants.

So good for you.

[PJBinMI]

i don't know about dental implants, but i suspect that we should not get them if we have bone mets and are on a bisphosphonate (Zometa usually) or Xgeva to strengthen our bones. I've been on Zometa and was switched to Xgeva when it became FDA approved, for about 18 years. What I've been told by my onc and dentist is that it's best to be off these meds for 3 months before and three months after any "invasive" dental work, and I assume getting implants would be considered invasive. These bones meds do alot to minimize the risk of bone fractures, and the risk of ONJ is fairly low (I don't know what the current percentage is but it was less than 1% when I was diagnosed. Having a history of regular dental care reduces our risk but sure doesn't eliminate it. A woman I met at a BC retreat who had developed ONJ told me that she kept getting infections in her mouth, and the dental soecialist she was seeing suggested she brush with Arm and Hammer Peroxicare toothpaste and also use original flavor Listerine as a mouth wash. She quit having infections once she started doing that. Her dentist was a professor at a dental college and knew alot about ONJ. ONJ doesn't sound like fun but I think it's worth the risk to strengthen my bones. We each have to decide for ourselves and we each respond a bit differently to our treatments. Sigh! So much crap comes with this lousy cancer! I hope whatever you decide to do will be the best choice for you.

[TammyCross in reply to PJBinMI]

The risk of ONJ is officially 5% the first year, 7% the second year. I say "officially," because I believe those data come from clinical trials.

The issue is not getting implants -- no one would do them if someone is on Xgeva; instead, they do a root canal and then cut off the teeth, especially if infections -- but the old existing implants. Xgeva goes after them, too. I speculate that the reason is that there is more space between implants and real teeth than between teeth and that space creates opportunity for infection. Just a guess.

[Trissh in reply to TammyCross]

Tammy, I hear you! When I read about implants I wondered who on earth would get implants when on Xgeva? Then it occurred to me that I better find out whether there is any risk if you have existing implants. I have had four of them implanted over many years for various reasons. When I looked deeper into the literature I found the mention of existing implants putting patient at higher risk of ONJ. Not enough is known to take the risk with that many implants. Thanks everyone for your input! Be well!

[GiGi00]

Trissh,I was on Xgeva for almost two years with no problem. Then a bone started coming through my gums. I went to an oral surgeon and it was from Xgeva. He took part of it off, and said the rest would eventually fall off, or if it was bothering me they would shave it off. So far it is fine, just strange to have bone where your gum should be .I did have an MRI and the rest of my jaw is fine, just a problem in one place. I also have three implants, and it has not affected them. I have read where implants are where you might have problems with taking Xgeva, but I did not. I am off Xgeva now and just waiting for this bone to disintegrate and the gums go back to normal.

[TammyCross in reply to GiGi00]

That is funny: I have gum where my bone should be.

[GiGi00 in reply to TammyCross]

tammy I guess I don't see what is funny. can you explain ?

[TammyCross in reply to GiGi00]

Wrong word. I meant odd, or possibly ironic, that you have bone where you should have gum and I have gum where I should have bone, both because of ONJ.

I lost a chunk of mandible and a couple of teeth. The top of the mandible was the bottom of the sinus, so when the bone was cut out, the periodontist just stitched up the gum, soft tissue, and that is the bottom of my sinus. It feels weird internally, and when I put my tongue where I used to have teeth and gums, it goes all the way up into my cheek, the bottom of my sinus. Not haha funny, but a weird sensation. I try not to let it upset me. It is what it is. So I go "whoa, hah!" That is my way of coping. If it offends you, skip my posts. Don't want to upset you.

[Ntash01 in reply to GiGi00]

GiGi00 - that’s a figure of speech. It’s not haha laughing at you or your situation.

[Hidden]

Hi there, I am on Zometa (similar risk for ONJ) and will be getting two dental implants next month. My onc is having me take a 2 month break from Zometa before and after my implants. I will let you know how it goes. 🤞

[Ntash01 in reply to Hidden]

Just being curious- are you in the uk? Has your tooth/teeth already been removed prior to implant? I have a teeth that needs to go… hanging in there by a thread 😭

[Hidden in reply to Ntash01]

I am in the US. Yes, teeth pulled and bone graft done last year before MBC.

[Iwasborntodothis]

Please read my posts on this topic