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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 02:37AM

fredntan wrote:


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 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Mar 22, 2017 12:32PM 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, 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, breast segmentation, beginning rads in Jan. 2017, then AIs. Dx 5/14/2008, IDC, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 10/31/2016, IDC, Left, ER+/PR+, HER2-

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