Jaw Necrosis-what you need to know
Comments
-
Well, I have an appointment with a head and neck specialist next week because of the continued pain and swelling that started after my appointment with a supposed oral surgeon specialist who just made things worse. Yes, I am scared. I already know that I already have bone mets at the base of my scull. I am just afraid that this could be the osteonecrosis and maybe a spread of the bone cancer. I have never smoked a day in my life, never chewed. I know that doesn't matter at this point. What worries me the most is the fact that I talk all day long. It's my job as a law enforcement dispatcher. I've been doing this for 37 years and had hoped to make it to 40. Not sure if that is going to happen now. Just scared and depressed and broken hearted. I think I would trade several days of nausea to take place of all the crap associated with the necrosis.
-
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.
-
Thanks Hopeful. You know how it is. You try not to read more into things, especially any new aches and pains or new appointments with new doctors. It just gets really hard sometimes not to let your mind go to that dark place.
Barb
-
It sure does get hard, Barb. And the wait for appointments and results tends to exacerbate it.
I'm hoping for you.
-
Ok, I'm trying not to be a nervous Nelly here and really trying not to put the "cart before the horse" as they say. I had been told that there was a surgery that could be done, involving bone and tissue grafts...... How can that work when the bone is already dead???? Then, factor in the fact that I have bone mets all through my chest (ribs,back, sternum) and at the base of my scull. I am just feeling pretty much totally defeated. I just need to hold on till Wednesday and see what the specialist has to say.
-
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
-
Thanks Melmcbee. I'll let you know what they say Wednesday. I feel like mine has gotten worse too.
-
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 was thinking about you yesterday and appreciate the update, although the news is kind of 'meh.'
It sounds as though there's nothing much different you can do, which is disappointing when what you're already doing isn't getting especially strong results, right? But no sign of head/neck cancer (I hope)? Did you get any advice on minimizing pain so that you can continue working?
-
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.
-
Thank you for telling is the news. I hope we all heal
-
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 had not heard of the normal saline solution. I will check with my oncologist when I see her next week. Right now, I use the biotene mouth spray and I also have something called Stellalife oral gel. It's an all natural product and it does seem to help with the pain and some of the swelling. It's suppose to help maintain oral health and help speed up healing after dental procedures. My dentist told me about this product and while it is a little expensive, it does seem to help some. At this time, the ONJ doesn't seem to be getting any worse, but I don't think it has improved much either. I guess it all takes time and patience
Barb
-
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.
-
Hi Everyone. Just an update here. New scans in April showed no significant changes... no new cancer and basically no growth so that's really good news. In a couple of weeks, I go back to see the Head/Neck oncology specialist to check on the ONJ. I'm getting a little worried and frustrated. It hasn't improved at all. Still taking antibiotics and using the chlorhexadine (sp?) mouth rinse daily. Going on about 8 months or so since this all started. I know it takes a long time to heal and sometimes it doesn't. Just trying to stay positive and not let it get me down. I'm in my third year of chemo treatments and all things considered, I've been pretty lucky. Other than the ONJ, my side affects and problems have been pretty minimal.
-
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!!!!!
-
ONJ Round Two!! My first bout with ONJ was actually 6 years ago. It took almost a year to heal. Two years ago we decided it was safe (and necessary due to bone mets), to try Xgeva again. Well, no pulled tooth this time, just a mouth sore gone wild.and here i am again. Joining the ranks of the peri rinsers and the pain wincers. Oh, joy
-
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!!!
-
Just a side note here. There are a couple of groups/pages on FB that are for ONJ people. It looks to me like this isn't as rare as some would like us to think it is...................
Barb
-
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.
-
Hi, I think your in my group on FB. I meant to ask how your doing, but can't remember who is who.
I created Living with osteonecrosis of jaw on FB. I think others have popped up. I was on Xgeva and grew a piece of bone out of jaw. i try and keep my teeth clean now. Like I didn't before.
One of my dentists thinks I could have knicked that part of jaw when brushing or eating tortilla chip?? once a opening in that thin part of jaw happens then bacteria can get in and cause bone to die. I have been surprised by the amount of people joining. not just MBC patients. 1 just was on prolia for osteoporosis, and 1 just came out of blue. of course being the internet, there is no way to validate who is telling truth or just wanting attention.
-
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!
-
pingpong-why would you be on a biophoshate? These are usually given to us in stage 4. but if you are-most docs recommend a 6 month drug holiday for biophoshates. of course I am not a doctor.
-
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.
-
My oncologist ordered zometa every 6 months as there is evidence that it prevents bone mets. She referred me to some good studies on this, and I'm with sbelizabeth on this. Also, I have osteoporosis (this came as quite a shock as I'm only 41!)
I went to see my dentist prior to having my first infusion, and he suggested extracting a tooth that can have issues in the next several years. I'm having the extraction tomorrow. I'm sure oral surgeon will give me his opinion on how long it will take for everything to heal post extraction before I have Zometa, but was wondering if any of you ladies know about it? I have my exchange surgery scheduled end of August, and I think I want Zometa done prior to that, with some time in between.
-
I wasn't really aware lower stages were getting these. I think thats great they are offering these now for youll lower stages.
-
fredntan, I take an AI, which can cause osteoporosis. I have a history of steroid use, and my mother basically died of osteoporosis, so I'm trying to figure out a way to preserve my bones but without putting my jaws in jeopardy. I've had a whole lot of dental work done in my life and don't need any more problems in that area.
-
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- .
-
I am Stage 4 and have been on Xgeva for two years. I just had a molar extracted on an emergency basis because it cracked in half. Other than upping my oral hygiene game - which won't be hard, I'm ashamed to say - are there any other measures I can take to promote healing and protect against ONJ? I'm an *under-reactor*, but I am moderately concerned and want to keep an eye out for any future symptoms.
Thanks - Katty
-
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
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team