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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 - edited Dec 18, 2017 01:28PM 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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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, 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 06:00PM 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 01:19AM 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 04:38PM ABeautifulSunset 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.

“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 13, 2017 07:23PM 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 08:21PM 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 12:49AM - edited Jun 29, 2017 12:50AM 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 07:17PM 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 08:31PM ABeautifulSunset 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

“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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Sep 17, 2017 05:29PM 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 9/16/2008 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 11/12/2008 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/18/2009 Breast, Lymph nodes Hormonal Therapy 5/18/2009 Dx 10/6/2014, ILC, Stage IV, mets, ER+/PR+, HER2-
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Sep 17, 2017 09:16PM 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 11:27AM 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 9/16/2008 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 11/12/2008 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/18/2009 Breast, Lymph nodes Hormonal Therapy 5/18/2009 Dx 10/6/2014, ILC, Stage IV, mets, ER+/PR+, HER2-
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Oct 7, 2017 04:32PM 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 7/9/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/9/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/23/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2013 Breast, Lymph nodes Surgery 5/30/2013 Reconstruction (left); Reconstruction (right) Surgery 12/4/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Hormonal Therapy Faslodex (fulvestrant)
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Nov 4, 2017 05:24PM melmcbee wrote:

Unfortunately I am in hospital with an abscess. Almost 1 week post-op. Doc said it looks like onj to her. My onc says i only had one dose of xgeva. I just want to fix this so i can go back on treatment


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 7/9/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/9/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/23/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2013 Breast, Lymph nodes Surgery 5/30/2013 Reconstruction (left); Reconstruction (right) Surgery 12/4/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Hormonal Therapy Faslodex (fulvestrant)
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Nov 10, 2017 02:24PM melmcbee wrote:

Well I am out of hospital with a picc line and iv antibiotics. Went to oral surgeon this morning for followup and got a copy of pathology report that says medication induced osteonecrosis. Guess I have onj. Any info would be appreciated on future care. 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 7/9/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/9/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/23/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2013 Breast, Lymph nodes Surgery 5/30/2013 Reconstruction (left); Reconstruction (right) Surgery 12/4/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Hormonal Therapy Faslodex (fulvestrant)
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Dec 18, 2017 11:23AM BJKinNebr wrote:

Hi. I'm new to the group. I have stage 4 metastatic breast cancer. I was diagnosed in January of 2016. After a year of chemo treatments and taking xgeva, I told my oncologist that I needed to have some dental work done. They took me off of xgeva for 3 months prior to my dental visit. I had two teeth pulled. They healed with no problems. The third tooth was a different story. On the upper right side of my jaw, broken and infected. It was pulled and at first it appeared everything was OK. About a month later, I noticed a small boney lump and at first thought it was maybe a piece of the tooth working it's way out. No such luck. I'm now taking doxycycline to prevent any further infections and using the mouth rinse (sorry, can't remember the name) The pain is much better now but the thought of not being able to go back on any kind of treatment for my bones does scare me. I already have mets all throughout my back, ribs and sternum. I've also noticed that my gums appear to be shrinking??? Is this also part of the whole wonderful experience???

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Dec 18, 2017 01:42PM Moderators wrote:

BJKinNebr, you too have been through the wringer! We are sorry to hear what you are going through. Make sure to look at this article. Osteonecrosis of the jaw and Targeted Therapies for Osteoporosis and Bone Protection: Prolia and Xgeva.

Sending you gentle hugs Medicating

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Dec 19, 2017 11:59AM BJKinNebr wrote:

Thanks so much for the information. I've been able to stay pretty upbeat and positive but as we all know, some days aren't as easy as others. I'm still working full time and plan to continue for as long as I can. I think it's important to keep my brain occupied. So far, we've been able to prevent any further growth or spread of the cancer and I'm grateful for that. Just wasn't expecting this issue with my jaw, but we'll just keep moving forward and keep fighting.

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Dec 19, 2017 12:17PM ABeautifulSunset wrote:

hi everyone. I thought I would chime in with my ONJ experience. I had had only two or three rounds of Xgeva, when a tooth broke and I had to have it pulled. I ended up with ONJ that took a bout a year for my body to extricate the dead bone (it has to come out in its own, as more surgery only makes it worse) and heal. I was off of Xgeva for two more years after that. When my Onc was a sure that i was 100% healed from it, about two years later, he put me back on Xgeva, which I have since been on for a couple of years with no years with no issues. It’s pretty horrible but it can heal. Good luck ladies.

STefanie


“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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Dec 19, 2017 10:16PM BJKinNebr wrote:

Thanks for your story and information. I knew it would take a long time to heal (hopefully) so I'll just have to be patient and listen to my doctor.

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-
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Jan 21, 2018 08:20AM BJKinNebr wrote:

Well, I have an appointment to see an oral surgeon specialist on February 1st. I was referred to him through my oncologist. My jaw necrosis isn't getting any better. I know, from what I have read here that it can take a long time to heal so I'm not really sure what to expect from this appointment. I just know that I'm getting tired of having to be really careful with what I eat and having to chew on one side, but I want this to get better!!!! I suppose if I have to go on protein shakes for an extended period of time, if this would help with healing, I'll do whatever I need to do. Dealing with this is harder than dealing with the Met. breast cancer.

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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Jan 21, 2018 01:44PM sbelizabeth wrote:

Here's a link to an article about hyperbaric oxygen treatments (HBO) to help with healing osteonecrosis of the jaw.

I've done many, many hyperbaric treatments for infections and infection prevention, and it has been a Godsend. Ask your doctor about it. And please feel free to PM me if you have any questions.

https://www.ncbi.nlm.nih.gov/pubmed/19371820

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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Feb 3, 2018 10:46PM BJKinNebr wrote:

I saw an oral surgeon specialist this past Thursday. We talked about the hyperbaric oxygen study. He said it was stopped due to

lack of real evidence of benefit for jaw necrosis. So, basically it's a waiting game. I'll continue to use all the mouth rinses, special

tooth paste and anything else they recommend and hope that it will eventually heal. In the mean time, it's a pain in the butt and

the mouth. I talk for a living. I'm a law enforcement dispatcher so I talk for 8 hours everyday, all day. By the end of the day,

sometimes it's pretty sore. Just another rough section of the road on this journey with cancer......

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 5, 2018 10:00AM BJKinNebr wrote:

OK. Maybe I am making more out of this than need be, but since Thursday, I have been in a lot of pain. My face is swollen on the right side. My mouth and jaw are very stiff. It's hard to open my mouth very wide and hard to eat anything that isn't mush or liquid. Saturday night I woke up having some pain. When I rinsed my mouth, I had a pretty good size blood clot come out. When I was at my appointment on Thursday, he did grind down some of the sharper edges of the bone scale (not really sure what the proper term is). Now I'm wondering if that was a good idea.... It was a tough week. I lost my last long time chemo buddy last week. I feel like the lone survivor now. It's just been tough and I have to say this is the most depressed I've felt in a very long time. It's got to get better!!! I see my oncologist on Wednesday and we will talk about all of 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 5, 2018 12:10PM ABeautifulSunset wrote:

jbk, I’m sorry you are going through this. Sounds like you might have an infection. I would look into that sooner than later. How long has it been? As I said before, mine took about a year to extricate itself and toward the end I couldn’t really eat either. And my mouth smelled like dead tissue. Totally gross. There is a light at the end of the tunnel, but I do feel your pain.


“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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Feb 6, 2018 11:41AM - edited Feb 6, 2018 11:43AM by BJKinNebr

Thanks "Sunset". I've been off and on different antibiotics since late last fall. The last one was omoxicillin, about 2 weeks ago. When I saw this doctor, he didn't think I needed to go back on any antibiotics.............. I'll be talking with my oncologist tomorrow. I think I trust her opinion more than his. On a good note, it does feel a little bit better today. This all started late last fall, in October so I guess I need to be more patient.

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 7, 2018 04:09PM Hopeful82014 wrote:

BKJ and A Beautiful Sunset - Thanks so much for sharing your experiences w/ONJ. I'm sure I'm not the only one who's finding them useful.

Could I ask whether you had discussions with your oral surgeons prior to the treatment that preceded the ONJ and whether you had prophylactic antibiotics? Did your oral surgeons approach your extractions with any particular precautions? (Despite all my precautions I will probably need some oral surgery and hope to avoid triggering any ONJ.)

TIA for any info you choose to share.

Dx IDC
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Feb 7, 2018 05:17PM ABeautifulSunset wrote:

No. Mine didn’t say anything..I myself don’t know it would be a problem (I had only been on Xgeva for 2 months at the time and was stil in chemo.) BUT my record did say I was on a biphospinate..I think he didn’t even look. Later I was told most dentists and even most oral surgeons have never seen a . Case of ONJ and wouldn’t know it if it hit them in the face. That is why a specialist guiding yours care is way important.

“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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Feb 7, 2018 05:34PM Hopeful82014 wrote:

Thanks, ABS. That is helpful. It's really a shame that you weren't warned and that your oral surgeon wasn't on top of things. Sad As if you didn't have enough to juggle as it was...

My MO did advise me of the possibility well before I started Zometa but, of course, they ALL say they've never seen a case of it. And I've found that even those in dentistry who are aware of it don't seem to know how to handle those of us on the drugs. There doesn't seem to be a standard of care for this.

I do not for a moment regret doing Zometa but am really chagrined to have ended up with such an unexpectedly damaged tooth at this point that I'm having to be so careful.

Dx IDC
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Feb 9, 2018 09:26AM BJKinNebr wrote:

I was on xgeva for almost a year. When I told my oncologist that I needed to get some dental work done, They immediately took me

off of xgeva and told me I needed to wait at least 3 months before I had any work done. I waited about 4 months before my first

extraction. My dentist was well versed on patients going through chemotherapy and had just come back from a conference on bone/dental

issues. The first one went fine as well as the second procedure. The third extraction, I had been off of xgeva for a good 7 or 8 months.

The procedure went fine but about 2 months later, I noticed the small bump on the inside of my jaw. I first thought it was a small piece of

tooth working its way out, so I waited thinking it would be OK. When I went back to see my dentist to see what was going on, I just felt

like it wasn't healing right, he knew immediately as soon as I opened my mouth that it was necrosis. I was also on antibiotics either before

and/or after each procedure. I was told that less than 2% will get necrosis of the jaw after taking drugs like xgeva and then having dental procedures. So much fun!!! Then, I was sent to an oral surgeon specialist who was supposedly an expert on necrosis. He didn't tell me

anything that I didn't already know and after poking around in my mouth and deciding that the rough edges on the bone scale (?) must be

bothering my tongue, he decided to grind down the exposed bone area. I will not be going back to this doctor. My mouth has been extremely sore and swollen for a week. My oncologist wasn't impressed either. At this point it is extremely had to eat anything that isn't liquid or mushy. Not a happy camper here.

Dx 1/26/2016, IDC, Right, Stage IV, metastasized to bone/liver, Grade 3, 3/6 nodes, ER+/PR+, HER2-

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