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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

fredntan wrote:

http://www.breastcancer.org/treatment/side_effects...

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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Mar 22, 2017 01:32PM Emily2008 wrote:

How awful for you!

My onc told me about jaw necrosis prior to getting my Prolia shot in January. He and the nurse told me to see my dentist before the shot to verify that no work needed to be done. I called my dentist's office ahead of the appointment to tell them why I was coming in and ask that he read up on the meds and possible rare complications. When I saw him, he said he was glad I gave him the heads up because he wasn't too familiar with the condition. He said all looked great in my mouth, and told me to schedule again for one month prior to my next Prolia shot to check. The way I understood, if at that time it's determined that I need work done, they will schedule it right before my next shot because by that time the Prolia would be pretty much out of my system. The danger is when you undergo dental work while the drug is active in your system. Of course, with Xgeva, I don't know if there is a way to stop taking it before dental work is needed, and maybe wait a couple of weeks until it's mostly out of your system???

So sorry for your pain!

Dx 5/08, IDC, Left, Stage 1, Grade 1, BRCA 2 pos. Mast. w/TRAM and implant, A/C x 4, Tamox. for 6.5 yrs, ooph and hyst in 2010. Dx. 10/16, local recurrence, Left, Grade 2, breast segmentation, 30 rads from Jan-March 2017, then AIs. Dx 5/14/2008, IDC, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 10/31/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Mar 24, 2017 07:00PM peggy_j wrote:

Sorry to hear you are going through this. If you want a second opinion, you might want to see an oral surgeon or even an oral surgeon at a dental school (the dental schools are often the place where they refer the unusual cases). Hope things get better (((hugs)))

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Mar 26, 2017 02:19AM fredntan wrote:

i have a seasoned periodontist now. im so sick of dr visits. these things just take time to heal

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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Mar 26, 2017 05:38PM Stefajoy wrote:

I went trough something very similar in 2012. Most dentists, and even oral surgeons, have not seen bisphosphate related jaw necrosis, and wouldn't know it if it hit them in the face. I finally got to a specialist at UCLA, after two unnecessary and damaging oral surgeries, and it took about a year to completely run its cycle and clear up. I lost a dime sized piece of my jaw the back, but I'm totally healed now,and even back on Xgeva. Miserable experience though. I feel for you.

Dx 7/29/2011, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Radiation Therapy 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 13, 2017 08:23PM fredntan wrote:

I have finally found the right dentist for my Osteonecrosis of jaw. I called around again and found a oral surgeon who had treated ONJ. He did pano xray and CT 3 D image at same time.

He said that at 3 month mark after break from Xgeva I should start seeing good changes. It will eventually grow out and heal over. The dead bone growth will pop off. I have been off 2 months. Won't go back on.

He said the chlorahexate rinse twice a day for 30 seconds/followed by no food or water 30 min after.

He put me on daily penicillin. prophylaxis-to prevent these outbreaks of pain/infection I keep getting.

He did say that the young dentist that did that root canal on me last july when I presented with this jaw pain...upon seeing that I was on Xgeva he should not have touched me and refered me out. That tooth will eventually be a problem and I will loose it. I will send in complaint to dental boards on him .

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 13, 2017 09:21PM MinusTwo wrote:

fredandtan - sorry you're having to struggle with this. Seems like many of the SEs from BC treatment are not well recognized even by the oncologists - let alone dentists. I'm glad you're writing up a report.

I was fortunate & received admonitions much like Emily posted, so before I said yes to Prolia, I did a LOT of research. This was one SE I was determined to avoid. I saw my dentist to clear that no work was needed and then went to discuss the condition with a trusted periodontist & an endodontist. My MO said if something comes up that requires an extraction or surgery or an implant, I need to wait to the very end of the 6 month cycle after the previous shot - and then wait another couple of months for good measure.

I'll get my third injection next month after seeing the MO and the periodontist. Fortunately I have had no side effects at all.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 29, 2017 01:49AM - edited Jun 29, 2017 01:50AM by embeedear

Stefajoy, may I ask who you saw at UCLA? I have been on xgeva for about 3 years for metastatic breast cancer with mets in the spine. I take great care of my teeth and see my periodontist every 3-4 months. Last month one of my teeth started getting tender, wobbly. I've been told that I need root canal, even though there is no cavity or decay (I am an aberration, I was told). Just started antibiotics before drilling next week. I've been off xgeva for 2 months. I am considering a second opinion, and have been googling ONJ specialists at UCLA. Would greatly appreciate hearing about your experience.

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Sep 14, 2017 08:17PM fredntan wrote:

bumping back to top.

Is there anyone else with ONJ experience?

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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Sep 14, 2017 09:31PM Stefajoy wrote:

ember and Fran, your experiences are like mine. Fran, the rinse and antibiotics I also did. And a had an oral surgeon remove a tooth when I was on Xgeva, without a question. The fact is that most dentists and orals never see a case of ONJ.

Just FYI, it does taken awhile for it to come out, you probably will lose a tooth, and it will eventually heal. I am almost 5 years since my ONJ. Two years ago I was cleared to go back on Xgeva. With bone mets, you gotta weight the risks. I have not had any problems.

Good luck all

Dx 7/29/2011, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Radiation Therapy 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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Sep 17, 2017 06:29PM LolaHank wrote:

I have had it for 2 years after getting my tori removed. It is getting worse. I use Chlorhexidine to rinse and amox 500 most days. I have seen 3 maxillofacial surgeons who have all said there is nothing they can do. I just read to stop caffeine and alcohol, start exercising and take vitamin D. Started taking oral morphine for pain in April and only take it as a last resort. Most days I can get by on 2 advil once or twice during the day. Have kept away from anything with a crust, chips or hard food. Watermelon is my best friend!

Sarah Dx 8/8/2008, ILC, Right, 2cm, Stage IIIA, 16/18 nodes, ER+/PR+, HER2- Surgery 9/15/2008 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 11/11/2008 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/17/2009 Breast, Lymph nodes Hormonal Therapy 5/17/2009 Dx 10/6/2014, ILC, Stage IV, mets, ER+/PR+, HER2-
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Sep 17, 2017 10:16PM sbelizabeth wrote:

Lolahank, what's a tori?

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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Oct 7, 2017 12:27PM LolaHank wrote:

They are hard lumps under the tongue or on the roof of your mouth. Torus or tori.


Sarah Dx 8/8/2008, ILC, Right, 2cm, Stage IIIA, 16/18 nodes, ER+/PR+, HER2- Surgery 9/15/2008 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 11/11/2008 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/17/2009 Breast, Lymph nodes Hormonal Therapy 5/17/2009 Dx 10/6/2014, ILC, Stage IV, mets, ER+/PR+, HER2-
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Oct 7, 2017 05:32PM melmcbee wrote:

I will have the left lower tori removed because i have a growing area of exposed bone. They think its from trauma eating. Im scared. Its already been 3-4 months off of my ibrance. Ive only had 1 xgeva injection. So right now my only treatment is faslodex. How long did tori removal take to heal. Thank

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- Targeted Therapy 5/15/2017 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)

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