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Topic: osteonecrosis of jaw ONJ

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Jan 14, 2021 05:34PM

fredntan wrote:


I had ONJ due to xgeva from July 2016 to nov 2017. I don't know what really caused it. I did not see the medical doctor that knew what ONJ really was until 2 days after the dead bone lifted off. It was about a inch long. The oncology dentist told me what happens is this..He said when the area of the mouth has trauma...this caused broken mucous membrane in skin...this caused the bone in that area to die....this caused infection.....which caused pain....I went to my local dentist. He talked to my oncologist. He said I needed a root canal...He did not really listen or understand my pain was not in that area. I think I got 2 unneeded root canals? IDK. I ended up going to 7 dental professionals. It is very hard to find anyone that knows about ONJ.

Thats why I started the FB group.....Living with osteonecrosis of jaw

You should not join if you don't have it. It can be too scarey. I went back on Xgeva this summer. I tried using exercise to keep my bones okay. But my calcium levels would not come down. I want strong bones.

I wish the drug companies could help out more with information on how not to get ONJ. I know on xgeva patient pamplet it talks about having good dental hygiene. It talks about not smoking. I stresses getting all your dental procedures taken care of before starting these bone meds.

We have talked in the ONJ group...I think my ONJ was precipitated by bitewing xrays. They used to dig into my jaw. I had one 3 months before it started. I have heard others say a chip or hard piece of candy may have caused it. One dentist said brushing your teeth too hard may contribute. Anything that causes a break in the mouth membrane has the potential to cause it.

It is hard to find someone that knows about ONJ. I know now most big University Hospitals have a oral and maxillary surgeon that is knowledgable about it. Dental Schools-the oral surgeon area is also a great place to start.

There is no real treatment for this. I grew a dead bone out of my jaw. It was hard. What made it worse is I had no idea what was really going on. If youll could reach out to the individual drug makers for indeas on how not to get it? It took me a good 9 months for a doctor to tell me abou the prescription mouthwash Chlorhexidine. It will Stain your teeth a icky color. A compounding pharmacy can mix it up without the dye if you have a script that says to make it without dye. I wrote the manufacturer of chlorhexidine...the dye can't be removed. It comes allready made with the dye for surgical uses. The person cleaning off surgical area needs to see where they have cleaned.

in 2018 Dr Tara Aghaloo has a good research paper on ONJ. It discusses treatment. She is at UCLA . This is the research article. I always just go to bottom of a research article and read conclusions. Reading about ONJ may contribute to insomnia.

Dr Robert Marx literally wrote the book on ONJ.He retired in 2020. He was in Miami Florida. He has a good video on youtube that could be shown to anyones dentist to tell them what antibiotics to order. I do have his book. I dont recall it saying much about prevention.

I have not found any good videos that talk about prevention. I use a electric toothbrush now. Flossing is important. My oral surgeon told me to use a prescription toothpaste with flouride. I read the directions. It said not to rinse it out. and to use it at night. He also told me to use a mouthwash with flouride. I am not anyones healthcare provider. Just a girl that grew a dead bone out of my jaw. I thought I was the only one. I made sure my adverse reaction was filed with FDA

Carry on...Ask your dentist or oral hygienist about avoiding ONJ. Hugs everyone

MBC bone mets since 2013 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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Jan 14, 2021 07:56PM exbrnxgrl wrote:


I am so sorry that you have had to deal with ONJ. My mo was very aware of the possibility of developing it, though it is considered low incident, and had me stop using Aredia, an older bisphosphonate, after 3 years. I recently asked my new mo what she thought and she did not want me to go back on any bone strengtheners. I was not told nor am I aware of any way to prevent it other than the obvious like not having invasive dental work. I wish you the best going forward

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jan 15, 2021 01:36AM MinusTwo wrote:

fredntan - thanks so much for posting all this. It's very informative. So sorry for all your horrible ONJ experiences.

Luckily I have periodontist who thoroughly researched Prolia before I started and definitely told me no dental extractions unless it had been at LEAST 6 months since my previous shot.

I too use Prevident 5000 prescription booster plus toothpaste for sensitive teeth. I also bought a Water Pick. So every night I floss, then water pick, then the Sonicare electric toothbrush. Fingers crossed - no problems so far.

I'm just preparing for Prolia shot #10, and spoke with Amgen. They believe they now have sufficient data that 10 years is safe- but well, that's the manufacturer. Neither my MO nor my GYN seem to to have definitive advise about a "drug holiday", and there's controversy about how long the bone effects last after stopping Prolia. I finally got an appointment with a bone endocrinologist. Who knew there was even such a thing. He specializes in osteoporosis and has written research papers on the leg bones of ballet dancers, etc. I'm looking forward to meeting with him the end of the month to hopefully learn something new.

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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Feb 3, 2021 08:41PM MinusTwo wrote:

I saw a bone endocrinologist who specializes in osteoporosis, bone drugs & esoteric things like ballet dancer's legs & runners bones. Basically he told me Prolia is now rated safe for 10 years. I just completed year 5. You should NOT miss your 6 month shot by more than a few weeks. If you contemplate a drug holiday, there isn't enough information yet to say a Reclast shot would work, although there are ongoing trials with results maybe in the next year. His recommendation was Fosamax in the interim if you have to stop Prolia, which you can now take once a week.

If you have to have dental work done on Prolia, schedule the last 4 weeks before the next shot is due (5 months). But do NOT skip a dose.

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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