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Topic: Jaw Necrosis-what you need to know

Forum: Bone Health and Bone Loss — Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Mar 19, 2017 03:37AM - edited Dec 18, 2017 02:28PM by Moderators

fredntan wrote:

Osteonecrosis of the Jaw

Here is a article about jaw necrosis. I have it. It is rare.

My jaw necrosis started July 2016 with slight pain and swelling to area where my wisdom tooth was. I have bone mets and have been on xgeva over 3 years.

What I have learned

Dont see a dentist that you dont know is good. Get referrals from friends or your healthcare team for a honest dentist

Use a electric toothbrush-oral B or soni care. Floss

My troubles started August 2016. I had been having annoying pain for a month in area wisdom tooth was. It had some swelling. I couldnt see, but a tiny bit of bone was exposed.

My new dentist in his flashy office saw I had good dental insurance. He saw the bone exposure. So he does 1 root canal, then a second one the next week. I had no pain in this area. I did after the root canals. My mouth was open 1-2 hrs. The jaw pain was horrible. Milkshake diet for a while.

When the caps where placed end of october. He finished xrays and said I needed 2-3 more root canals. I saw another dentist for second opinion. He said same thing.

By this time I had diagnosed myself as having jaw necrosis. My oncologist gave me his periodontist who confirmed my diagnosis. We stopped Xgeva a while. He thinks I could have hit this area with my toothbrush which may have started this thing. I did many rounds of antibiotics that fall. I started using sonicare. Costco had a discount on it and brushes-plus there return policy is great.

I now have older dentist and my older periodontist. I have had 3 more crowns done. I think the root canals werent needed and have delayed healing. My exposed bone area is about 5mm round-smaller than dime. I am back on Xgeva.

I have heard vitamin K can help healing, but have forgotten to ask my periodontist. I go in about monthly and he tries to pull it off. He also scraps off the boney spurs. Its like having course sandpaper back there. Once the pointy bone spurs are scraped off it isnt so bad. Of course the pain with it can get right annoying. I think when its growing it gives me pain and swelling

Remember this is RARE.

Anyone else gone through this?

MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/9/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/29/2012 Breast, Lymph nodes Surgery 10/8/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/3/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/20/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Posts 31 - 54 (54 total)

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Feb 15, 2018 12:08PM BJKinNebr wrote:

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.

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Feb 15, 2018 02:28PM Hopeful82014 wrote:

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.

Dx IDC
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Feb 15, 2018 03:44PM BJKinNebr wrote:

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

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Feb 15, 2018 10:02PM Hopeful82014 wrote:

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

Dx IDC
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Feb 18, 2018 09:34AM BJKinNebr wrote:

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.

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Feb 18, 2018 10:01AM melmcbee wrote:

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

Melanie. mentor smooth round high profile gel 700 rt 550 lt with fat grafting 5/30/2013 Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/8/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/8/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/22/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/8/2013 Breast, Lymph nodes Surgery 5/29/2013 Reconstruction (left); Reconstruction (right) Surgery 12/3/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Hormonal Therapy Faslodex (fulvestrant)
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Feb 18, 2018 11:27AM BJKinNebr wrote:

Thanks Melmcbee. I'll let you know what they say Wednesday. I feel like mine has gotten worse too.

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Feb 22, 2018 10:10AM BJKinNebr wrote:

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!!!!

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Feb 22, 2018 02:07PM Hopeful82014 wrote:

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?

Dx IDC
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Feb 22, 2018 02:55PM BJKinNebr wrote:

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.

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Feb 22, 2018 06:09PM melmcbee wrote:

Thank you for telling is the news. I hope we all heal

Melanie. mentor smooth round high profile gel 700 rt 550 lt with fat grafting 5/30/2013 Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/8/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/8/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/22/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/8/2013 Breast, Lymph nodes Surgery 5/29/2013 Reconstruction (left); Reconstruction (right) Surgery 12/3/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Hormonal Therapy Faslodex (fulvestrant)
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Feb 28, 2018 02:16AM - edited Feb 28, 2018 02:21AM by SajeScents

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

Dx 12/7/2016, ILC/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 1/8 nodes, ER+/PR+, HER2+ Surgery 12/12/2016 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Chemotherapy 1/23/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 6/5/2017 3DCRT: Breast, Lymph nodes Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Arimidex (anastrozole)
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Mar 1, 2018 11:58AM BJKinNebr wrote:

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

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Mar 13, 2018 12:29AM peggy_j wrote:

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.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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May 8, 2018 10:54AM BJKinNebr wrote:

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.

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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May 27, 2018 10:03AM BJKinNebr wrote:

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!!!!!

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Jun 5, 2018 04:23AM ABeautifulSunset wrote:

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

“Sunsets are proof that endings can be beautiful too.” Dx 7/29/2011, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Targeted Therapy Afinitor (everolimus) Chemotherapy Xeloda (capecitabine) Chemotherapy Xeloda (capecitabine) Chemotherapy TAC Targeted Therapy Ibrance (palbociclib) Surgery Mastectomy; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole)
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Jun 10, 2018 09:25AM BJKinNebr wrote:

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!!!

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Jun 10, 2018 09:31AM BJKinNebr wrote:

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

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Jun 20, 2018 09:08AM - edited Jun 20, 2018 09:09AM by DivineMrsM

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.


found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Jun 23, 2018 01:51PM fredntan wrote:

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.


MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/9/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/29/2012 Breast, Lymph nodes Surgery 10/8/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/3/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/20/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Jun 23, 2018 09:05PM pingpong1953 wrote:

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!


Dx 4/12/2017, DCIS/IDC, Right, 1cm, Stage IIA, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 5/2/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/5/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 12/8/2017 Femara (letrozole) Surgery 2/27/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Right
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Jun 23, 2018 09:22PM fredntan wrote:

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.

MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/9/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/29/2012 Breast, Lymph nodes Surgery 10/8/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/3/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/20/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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19 hours ago sbelizabeth wrote:

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.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap

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