osteonecrosis of jaw ONJ...I had it..I know things now.

[RNwithMBCsince2013]

Hi...I am a RN living with MBC since 2013 ..I had ONJ from July 2016 to nov 2017....near the end I started the fb group...Living with Osteonecrosis of Jaw with Christina....she died..

Here is what I learned...

2 days after the dead bone popped out...yes I grew a dead bone out of my jaw pretty much alone...went to 7 different dentists...while juggling MBC...I never smoked and I had very good dental care..

2 days after the bone came out...I saw Dr Dennis Abbott he is a oncology Dentist...he told me...explained what had happened..

He said there was "trauma"...there was trauma in my mouth that caused a open area in my mouth...this allowed germs to get in...this caused bone death...the body had to push that dead bone out...

There were many cycles of pain and infection ...I unfortunately didn't get to a knowledgeable dental professional until a long long time..

The key to treating ONJ is to knock that cycle of infection down..with prescription chlorhexidine mouthwash...my first dentist warned me it would stain my teeth badly...told me to dab at the exposed bone with cotton swab...

I've since read a research article from Dr Tara Dagaloo from 2019 where she explains how to scrub the area...she is a researcher from UCLA...

Then dentist number 5 prescribed the chlorhexidine to be formulated without the dye at compounding pharmacy....and after a year into it the cycles of pain and infection stopped...

Things that Dr Abbott said can cause trauma....brushing too vigorously with toothbrush, hard candy or chips. I believe bite wing xrays caused mine....I had mine 3 months before symptoms started....they always cut into my back jaws...this is most common spot for onj btw... they have padded bite wings I have learned...not all offices have them....

I now use a electric toothbrush...I see my dental hygienist 3 times a year....and floss sometimes once a day...

This horrible side affect needs way more...my oncologist....it took him months to believe I had it..even though I saw indication on my scans that something was going on in my jaw...I was a radiology nurse...I learned too much...

I did find a really good YouTube by now retired Dr MARX that could explain to any doctor how to begin treatment...he wrote the book on ONJ.....retired now...I did find the book on Scribd...I bought the hard copy of the book...it has scary pics though...wouldn't recommend buying..

That is all...carry on...

[Zebra2018]

thank you so much for sharing this valuable information with us. I know you learned it in a hard way. Thank you and god bless

sima

[Iwasborntodothis]

Bless you for this information. I a saga about a chipped tooth (still on my account) a year and a half ago. The Xgeva causes dentists to freak out and my oncologist still asks me about my tooth. In order to avoid this I had to get a root canal and leave the piece of tooth in my jaw so as not to disturb my jaw. It is so complicated and all of us on Xgeva need to be aware.

Again, thank you

[Ursula_I in reply to Iwasborntodothis]

hello, is Xgeva the same as Zometa do uou know? I have been told of the risk of ONJ with that. Thank you.

[Iwasborntodothis in reply to Ursula_I]

Yes I believe so.

[TammyCross in reply to Iwasborntodothis]

No, it is a different one, same possible side effect.

[hopenowandtomorrow]

This is good information, thank you for sharing with us! I understand that Hyperbaric Oxygen Therapy (HBOT) helps tremendously with jaw bone death caused by Xgeva type drugs & radiation induced bone problems. It is FDA approved therapy for radiation induced injuries. There are no contraindications for people with active cancer.

I’m considering HBOT (defined below) to help heal my broken pelvic & sacrum fractures due to radiation weakening the bones.

Hyperbaric oxygen therapy (HBOT) is a non-invasive treatment that greatly increases the amount of oxygen in a person’s bloodstream, promoting stem cell mobilization and repairing damaged tissue to heal wounds internal and external wounds in the body. The versatility of the therapy ensures that it can be utilized by a wide range of patients, including diabetics. 

This treatment is also highly effective for those who’ve experienced a concussion, a stroke, or cancer treatments, it is often incorporated into a variety of health optimization and recovery plans.

Anyone with experience with this treatment?

❤️🙏❤️

[Verbena1]

wow you really went through it, I’m so sorry all of that had to happen for you to get to the bottom of it. 5 dentists! You definitely did your research and I admire that. I’m going to look into the YouTube you mentioned (if it’s still up).

I don’t know if you’ve ever seen the documentary “Root Cause” but I found it hugely eye opening. Especially for anyone who can’t get to the bottom of their health issues. the film does get into osteonecrosis but also happens to touch on BC statistics within the first 20 minutes:

One interviewee:“98% of women who have Breast cancer have a root canal tooth on the same side as offending breast cancer.”

another interviewee:“97% of our breast cancer patients age 30-70 had a root canal or a toxic situation in the teeth” 

youtu.be/KFTZ2Cz1ueQ(Not working as expected?)

I’ve been getting oncologic treatments since 2020 and to this day my oncologists tell me there is 0 connection between our teeth and our health. To me the connection is obvious, (but I’ve also been doing my research on that for many years). They don’t promote healing or remission in this medical world, just “more time”.

After researching Xgeva a little more, I was horrified that the risks of staying on it (cited on the Xgeva website itself) are no better than coming off it, and I took myself off it in August. 

The biologic dentist I want to go to for the cavitations and other work has told me due to the osteonecrosis risk that they won’t work with me until it’s been 9 months off of the drug….I feel like I’m in a race against time to get this work done, but in my personal opinion, I think it’s very likely that much of the dental work I had done years ago is the primary reason why I am still having flare ups years later in the same breast and cannot heal.

My belief is that our bodies can and will heal in most cases if we remove the cause of disease at the deeper levels. I understand this is not a popular opinion and not one that most oncology clinics would even consider and that’s not my battleground. But for me it’s so hugely important to consider our dental health in the grand scheme of things too, and so I’ll always mention it where I can if it can potentially help someone.

Appreciate your post, all the best to you!

[TammyCross in reply to Verbena1]

That is really interesting. I had root canals way before bc -- I mean, in the middle of the long period between my original bc and the recurrence. I thought it was just my age. Everyone was doing it, root canals and implants. When I started on Xgeva, though, it went after the two implants. I had an extraction while on Xgeva with no problem, though. Obviously, our bodies are connected, all the parts. I guess it is a question of what triggers what.

[Sparky95]

Wow. Thank you for sharing this information. I have friends who have experienced this. I appreciate you sharing what we can do to prevent it. I’m on Xgeva and I knew it had risks I just didn’t understand why or how it caused bone necrosis and noe you explained it. Thank you!!

Esther

[NPmary]

Thank you for sharing your hard learned knowledge.

[Tolife_18]

Thank you so much for sharing your painful journey with us. The information you provided is very valuable.

During the last dental exam I was told that my bridge broke and part of it needs to be replaced in order to save the save the remaining piece.

My last dose of Xgeva was mid-September, but neither dentist or my oncologist know for how long I have to be off Xgeva in order to get a procedure. Very frustrating

Any advise?

Thank you and be well!

[Pachira in reply to Tolife_18]

I was told by my oral surgeon that it took a year to 15 months. The oral surgeons are the ones that know about Onj. I’d highly advise a consultation. Good luck Chris

[Iwasborntodothis in reply to Pachira]

Agree I have been told that no matter how long I am off the drug the danger will exist and that it is simpler not to mess with invasive dental procedures at all.

[Verbena1 in reply to Tolife_18]

There is a blood test you can take that will indicate your readiness for dental work…I forgot the name of it but I believe it starts with CTX telopeptide or something similar. It assesses your risk of osteonecrosis, I just had it done due to work I need to have done. You’ll just need the prescription for it - my dentist wrote mine.

[RNwithMBCsince2013]

Yes the oral and maxillary surgeons at bigger cancer centers are well versed in onj...same at dental schools

[Tolife_18]

thank you so much for your prompt response. I’ll definitely f/u with the surgeon.

Just wondering if it’s ok to pause Xgeva for such a long time?

[RNwithMBCsince2013 in reply to Tolife_18]

I havnt been on xgeva many years...I prettty much stopped it after ONJ....Its only to stop the bones from getting weaker...It doesnt make them stronger...I walk...my dogs make me...I take calcium supplements...I was able to finally get my dexa or bone density scan up to Normal last month!! I do walk a lot with my dogs...I was osteopenia...

[kokopelli2017 in reply to RNwithMBCsince2013]

hi. Zgeva and Zometa both actually change the 'microenvironment' of the bone to make it an unfavorable environment to the cancer.....a cancer repellant of sorts is how I think of it. this is what my onc explained to me and I found research articles that backed it up. however, ONJ is not to be taken lightly....scary stuff. anyways, just wanted to fyi you on a different reason for taking the meds. I agree not necessary for bone strength if doing what you do on daily basis, which is great. XO

[TammyCross in reply to kokopelli2017]

I thought Xgeva actually did more than Zometa, something to do with the osteoclasts, which made it more effective if one has cancer in the bones. But then you know how that worked out for me. Bone mets were cleared up, but I stayed on it too long after.

[kokopelli2017 in reply to TammyCross]

yes I do know how badly it turned out for you....ONJ resulting in the loss of 4 of your teeth and part of your jaw😳! thank goodness you have had great dental docs to help get you through.

this does bring up a point. that perhaps the 'standard' should be that a patient is only on these meds for a predetermined length of time. from what I understand, after a period of time, you no longer receive as much benefit from these meds, meaning that the cons (ONJ) start to outweigh the pros. they would have to do a study to determine what the 'optimal' length of time should be.....3 years? 2 years?. but not indefinitely. this approach makes sense to me. but the docs need to get on board with this to get that ball rolling.🤞

[TammyCross in reply to kokopelli2017]

I was on it for just over two years, I think. Then it took so long to clear from my system -- maybe 8 months? Not the 4 or 5 it says on the Xgeva website. (All the docs and dentist said they didn't really know.) So I would say 2 years max, less time if you don't have bone mets or they have resolved, or have dental problems.

[Ursula_I]

Thank you for such a detailed post. I've been on Zometa for a year which I believe has similar risk of ONJ. It's so hard to know what to do for the best - the cancer is all over my skeleton and they said the Zometa will help the bones to resist it.

I will make a more determined effort with my oral hygiene...

Right now I have bigger fish to fry... progression in the brain.

Thanks again and all the very best to you

Lucy

[kokopelli2017 in reply to Ursula_I]

oh Lucy. I am so sorry to hear that😔. you have had more than your share of struggles. I so wish you would catch a break🙏. have they/you come up with a treatment plan yet or too early. I'm thinking of you and will be interested in what comes next?

sending BIG hug and best wishes....

carole💛🌺

[Ursula_I in reply to kokopelli2017]

thank you, Carole. More news after my MRI next week (well, follow-up appointment 21 Dec).

[TammyCross in reply to Ursula_I]

Yes, stay on it! Or even Xgeva! It worked a miracle on my many bone mets -- or something did. What I didn't realize is that I should have gone off it when the bone mets cleared. I started refusing it, but acquiesced a few times, then finally said no more, and the oncologist said I didn't need it any more.

I hope this works for you, and there is a time you can stop because it has!

[Ursula_I in reply to TammyCross]

thank you. I will ask the oncologist.

[Normalee1965]

I was on Zometa injections for two years. I didn’t know about this possible rare, side effect. A piece of bone in my jaw died after I had to have a tooth removed. Then I developed a hole in the roof of my mouth that went into my nose, I had surgery for that then developed a hump in the roof of my mouth which has now turned into another hole in the roof of my mouth. Going to Moffett specialist Thursday to see what can be done. It’s very painful and I was told not to have my teeth cleaned. So now I don’t know which way it should be. my mouth stays so sore around my gums and I’ve tried everything and nothing heals any of it. The hole in the roof of my mouth is very painful and you cannot avoid hitting it with any kind of food. I hope no one gets this it’s not fun.

[Hazelgreen in reply to Normalee1965]

Wow! That sounds really horrible! I am very sorry that you are going through this.

It also angers me that oncologist prescribe Zometa (mine continued to recommend it even after I explained why I wasn't going to take it) without warning each patient about such extreme side effects. To me, it is almost a form of malpractice.

[kokopelli2017 in reply to Hazelgreen]

I agree Cindy.

I was very much 'on the fence' about Zometa, when first diagnosed with mbc, because of the possibility of ONJ. not only did my oncologist down play this side effect of ONJ, she basically dismissed it. she said none of her patients on Zometa had ever developed ONJ. from what I have since learned about it's prevalence, I find that hard to believe. did she lie to me? well she just retired from being a breast onc for over 30 years...that's a lot of women she treated. I stopped Zometa after 3 years, at my request, after my jaw bones started to light up on my bone scans. she did agree with this decision.

as an aside, this same onc also told me that 'none' of her patients on ibrance ever developed ILD (interstitial lung disease) which I also find difficult to believe. I think she outright lied to me on both of these meds. inethical behavior😡 (the ibrance I did decline against her advice)

we, as the patient, need to be better informed of the extreme side effects of the treatment meds we are given. I believe strongly.

sending best wishes💛

carole XO

[fancydog]

Thanks for your post. My Onc stopped the Xgeva at the 5 yr mark, because of more and more data about concerns w/ONJ, which required a yr of titrating off by getting a Zometa infusion every 3 months for a year. I recently had a bone density test that was Normal. I expect even more info coming out of the big BC Conference going on this week in San Antonio. Luckily I have not needed any invasive dental interventions. I expect more data will be coming about risks vs benefits, maybe even safer drugs in the pipeline. I have not had any bone mets except at time of Metastatic Diagnosis.

[BluHydrangea]

wow! Thank you for this informative post!!!! I just started back on Zoneta after being off of it for 18 months. I really appreciate the concern about bitewing X-rays. I’ll have them pad it next time. Thanks and glad you are finally healing!❤️

[TammyCross]

Wish I had known the mouth wash could be formulated without dye! I just squirted it in a spot where a dentist pulled a tooth. That healed up fine. But I really needed to swish with it, because an infection somewhere else brought on ONJ. The extraction was fine. It was an implant that set off the infection.