Jaw Necrosis-what you need to know

Thanks to each of you for sharing your very helpful information and experiences. I truly appreciate it.

BJK - There aren't any words for how sorry I am that you're dealing with one thing piled on top of another. I'm praying that it won't turn out to be the ONJ nor a spread of the cancer. I hope the head and neck specialist will actually be able to ID an effective plan to solve your issues. Hang in there, sister.

It sure does get hard, Barb. And the wait for appointments and results tends to exacerbate it. I'm hoping for you.

Barb I am right there with you. My jaw feels like its continuing to deteriorate. Ive had tori removed on that side which has healed but I have a hole in back behind teeth that wont heals its onj. I feel like its spreading. I would be interested in any surgery to repair it but i was told surgey isnt an option cause it will cause necrosis to spread. Please let me know if you find any good solutions. I hope you heal fast

Well ladies. My appointment yesterday went pretty much the way I felt it would. I saw a Neck and Head Oncology specialist who deals with ONJ. Everything he told me was pretty much exactly what I had already read and been told by other medical specialists. It is strongly advised to leave it alone and let it heal on it's own. The more they pick around, grind, graft, etc., the worse it can get. The one surgery which involves grafting tissue and bone is not an easy one in any way. It would involve a hospital stay of a week and it doesn't always turn out the way you would like. Sometimes it heals, but sometimes it doesn't. The best thing to do is continue to use the mouth rinse, stay on the antibiotics, eat softer foods to avoid irritating the mouth and do everything to keep your mouth clean and healthy. Not exactly what I wanted to hear, but I was prepared for it. Also, the fact that my cancer has already spread to my bones, that could add another layer to the possibility of it not healing. The grafting surgery is no guarantee. So, we wait. Do what the doctor prescribes. Deal with the pain and hope and pray for healing. I will get through this!!!!

I do have pain meds (hydrocodone) that I can take if needed. I try to just get by with a couple of Advil if I can. My oncologist will be scheduling new scans in March. Hopefully we will be able to say "stable" again with no significant changes.

Hi, BJKinNebr,

Barb, I've just read through all your posts on this thread and want you to know you're in my thoughts and prayers. I'm sure you're doing this already, but do you keep bottled "normal saline solution" (sterile salt water available from any pharmacy) with you constantly (work, home, etc.)? I buy it by the Litre from my hospital pharmacy. I am on Prolia (I know it's not as strong as Xgeva), but since I had jaw surgery in the my youth with residual wire sutures, I now have to be super careful. I swear by this "normal saline" (same pH as body tissues). I used it a lot during radiation therapy. It can't hurt and it has a twofold purpose (cleansing and moisturizing your mucus membranes).

In another thread, they're talking about Vitamins K2 and D3 (along with calcium and magnesium) to help build bones. You probably know this and more, but just in case, you might want to glance at that thread. https://community.breastcancer.org/forum/120/topics/838938?page=5#idx_135

I really hope and pray you get past this soon.

- Gramma Dale

I'm not sure what the store-bought saline solution offers, but warm salt water is a go-to for a lot of dental woes. Maybe you can call and ask you DDS (or just try and see if it helps). It can reduce swelling, fights infection, andthe heat cause the blood vessels to open a bit, which promotes healing, etc.

Another checkup with the Head/neck oncology specialist last week. Things are pretty much the same.... not any bigger but not smaller either. Not what I wanted to hear, but pretty much what I expected. He did tell me that since my necrosis is in the back of my mouth were the jaw bone is really thick, there's a good chance that it won't come loose on it's own... So, we wait. I will continue with the antibiotics and mouth rinse. I'm also going to add the salt water rinse. It can't hurt. Just so frustrating!!!!!

Oh Sunset. I am so sorry to hear that you have to go through this again. This is just my first time with ONJ and it is driving me crazy!! Mine started last fall after a dental procedure. I had been off xgeva for approx. 6 months at the time. I have bone mets all through my back and rib cage. I was on xgeva for a year before we stopped so I could have some dental work done. It has now created an opening from my upper jaw to my sinus on the right side of my nose.... not very pleasant. Praying that your second round of this painful side affect heals quickly!!!

BJK, this week my onc agreed I could cut back zometa from three months to six. I’ve been asking for a while for the cut back. She was somewhat reluctant to do so because I have had a long stretch of stability, 7 1/2 years, and doesnt want to mess with whats working. But I worry about side effects as I have been on zometa for 7 1/2 years.

Are you off any bone strengthener? Do you ave any advice for me?

I had a scan in March, all was good except showed a possible foot fracture and onc said probably not related to mets as they dont travel there. Despite babying the foot since then, it still hurts and I have a podiatrist appt in a few weeks. I am concerned the fracture may not be healing because of the zometa, tho its only a guess at this point.

This is what scares me about these drugs. The advice to stop taking the drug for 3 months before dental work is great, but can someone tell me how I can schedule my dental emergencies? I've had a whole lot of dental work in my life - I'm 65 so I didn't have the advantage of fluoridated water - and my "infrastructure" crumbles on occasion. I broke off a piece of filling just by eating a potato chip!

I was diagnosed in 2011 and am NED. There’s solid evidence that a bisphosphonate or bisphosphate-type drug such as denosumab can help prevent bone mets. I’ve been on Prolia for a couple of years. A shot every six months.

Just an update, in case someone needs this info. I went to oral surgeon to have a tooth extracted in preparation to starting Zometa. (Probably could have kept the tooth, to be honest, but it's not relevant anymore).

His take is - I will need 3 months to heal after the extraction before starting Zometa. 6 months if he didn't do bone grafting. I consented to bone grafting, had the tooth extracted yesterday. Wow, I wasn't expecting to have to wait that long.

If anyone is curious regarding Zometa for early stages, my oncologist is basing her recommendation on this study: https://www.nejm.org/doi/full/10.1056/NEJMoa080628....

"The addition of zoledronic acid to endocrine therapy, as compared with endocrine therapy without zoledronic acid, resulted in an absolute reduction of 3.2 percentage points "

The study was on premenopausal women who were on ovarian suppression and either AI or Tamoxifen with or without Zometa. Also, women in this study were relatively low risk for recurrence - only 5% did chemo, and only neoadjuvant chemo was allowed. My onco made a comment about this being European study and European oncologists aversion to doing chemo in HR+/HER2- .

Katty, there is call for concern. I would get a prescription oral antibiotic rinse and use it twice a day. Keep your mouth clean, but be careful of the injured area. Then cross your fingers and hope for healing. Stop the Xgeva for a few months (it’ll be fine), until you are fully healed.

I don’t think there is anything else to do. Sorry and good luck. I have ONJ now for the second time. Not fun

A beautiful sunset