Necrosis

I’m troubled today as I have suffered with Necrosis of the jaw bone from a tooth extraction and having Denosumab injections. The past few days I have felt soreness and discomfort around the tooth socket which is basically just a hole now. I’ve had a good look and there seems to be a tiny piece of bone exposure yet again. I’ve already had 5 tiny pieces of bone removed and was told it would be fine now. After 7months off the injections due to the damage I went back on Denosumab. I’ve had two shots so far but none since March due to the virus and not attending hospital. Any ideas ladies. Barb (Barbteeth) any ideas. Take care ladies. A Sunflower and Bee to brighten our day. At our allotment last year.

[Barbteeth]

Hi there

Although I was a dentist for over 40 years I’m not familiar with ONJ and have never seen a case

You’re very unlucky to have this happen as it’s extremely rare 1-10% for patients on denosumab

The main problem is secondary infection so I assume you had that since you mentioned you had some pieces of bone removed

The treatment is antibiotics and keeping the are clean with something like chlorhexidine mouthwash...you could buy a syringe...remove the needle and squirt the mouthwash into the socket if it’s deep

However I would let your oral surgeon have a look first

I’m sorry I’m not much help

Barb xx

[Hidden in reply to Barbteeth]

Thanks Barb. I have used a syringe since discharge from the Facial/Cranial Dept in February. I use Corsodyl twice a day. My Dentist will have to refer me again to the Specialist and she’s not back until 8th. Thanks for replying. The wound is clean but sore where the jaw bone is beginning to show again. Pissed off is putting it mildly. Hope you are feeling okay today. Cheryl

[hope4mbc in reply to Hidden]

Hi! I was diagnosed with osteonecrosis of the jaw due to Xgeva injections last December. I was immediately informed by the oncologist that I would no longer have any Xgeva injections. I was referred by the cancer center to an oral surgeon who had handled a lot of cases involving cancer patients. He is the type of oral surgeon who handles jaw reconstruction. He evaluated me and stated that I was fortunate because I had a mild case. He prescribed Cholorhexadine Gluconate which is a prescription mouthwash. I was advised to use this twice a day. The hardest part for me was having a portion of the jaw bone flake off. The first time it happened I saved the pieces which I brought to the first appointment with the oral surgeon. He advised me that gum could not grow over exposed bose; however when the bone flakes off it forms a cavity which gum can grow over and heal. He also advised me not to have any dental work or periodontal work while my jaw was healing. After my meeting with the oral surgeon, I was at a restaurant and another chunk of jaw bone fell out while I was eating. Needless to say I was very upset and called the emergency number to speak to the person on call who turned out to be my oral surgeon. He was very reassuring, and stated that this was okay and would help the healing process. My gums are doing much better now, and I feel like the area is healed. I have my first dental appointment in a few weeks, so I will know more then. I really appreciate the fact that this oral surgeon recommended a conservative approach. With all the cancer treatments, I was really not sure that I could take jaw surgery in addition to that. I very much appreciate the fact that he advocated a conservative approach.

[Hidden in reply to hope4mbc]

Thanks so much for your reply. I know I’m not the only one now. The socket seems to be getting smaller so maybe it’s part of the healing process. I had the tooth extracted last July and the jaw decay started October time. I had an injection a week after the extraction which shouldn’t have happened. The Chemo nurse was reprimanded for it but it didn’t help me. She also recorded it as me having the tooth extraction 3 weeks prior to the extraction. Damage is done now and I will get the mouth wash mentioned prescribed. Thank you

Best wishes

Cheryl

[Teddielottie in reply to Hidden]

I am sorry you are having to deal with ONJ as well as everything else ...I have not had experience of it myself so can’t give any advice , but I do remember my onc telling me that she has 3 patients out of 100 with it , so it is more common than we think . I know that my onc has referred her patients who needed more serious surgery treatment to South Yorkshire ( Sheffield) . We are in West Yorkshire . Where did you get your treatment ? I would let your onc know asap as you may need antibiotics . Take care !

I love the 🌻 and 🐝 pic . We’re seeing a lot of bees this season , maybe since all the sunshine we’ve been getting up to now and the beautiful blooms ... the local village school close to us have a nature garden and have their own bee hives too ! x

[Hidden in reply to Teddielottie]

Strangely enough my dentist called today to see how I was doing. I was so pleased. I have a good relationship with her and she is so caring. Surgery opens Monday and she will call and give me a time to see her. What a relief. I had all the warnings prior to having my Cancer treatment and another Dentist did a check up and gave me the all clear to go ahead with treatment. I didn’t go back to him. I had my treatment in Aintree Hospital for bone removal but had the tooth extraction in Liverpool where I live.

I love bees. Well done to the school near you. We are growing Sunflowers again this year. We have lots of Lavenders to. Bees love it.

Take care.

[Barbteeth in reply to Hidden]

Hi Cheryl...I’m fed up as well

What a life

Barb xx

[Hidden in reply to Barbteeth]

It’s just a nightmare Barb. We just don’t know where we are going with this. I’ve been more than tearful this week. We have been to the allotment every day apart from today as it’s raining. It does pre occupy my mind but I’m up for hours some nights with rubbish going through my head. I hope you can have a little plod. It seems to cheer you up. Thinking of you. X

[Barbteeth in reply to Hidden]

Hi there

I actually do sleep well but if I do wake up during the night...then I can’t get back to sleep

It was rainy in Nottingham so I did a yoga class and had a walk in the rain by the Trent but nice to be outside

Will ride tomorrow

Let’s try to be happy

Barb xx

[Hidden in reply to Barbteeth]

Yes, release those endorphins. We are popping out tomorrow. We have had a welcome day at home today.

Xx

[Mememememe in reply to Barbteeth]

Hi Barb. I am new to this discussion. I see you have a long history of dentistry so hope you can give me some advice too. I am in England so I'm guessing the medication names may be different, but here goes anyway.

I was prescribed Alendronic acid(oral) in 2014 for osteoporosis. I stopped taking it in November 2018 after doing some research and discussing it with my doctor(she did not agree). I have had tooth hygiene and gum problems for many years and have regular check ups twice a year with my dentist and twice a year with a dental hygienist. I follow their advice and keep them as clean as possible. I have had ongoing problems with one tooth with a crown, it is quite loose. Last week I saw my dentist due to pain around this tooth. She did an x ray and told me there was not much bone there now. She could have removed the tooth, but advised against it due to my having taken the alendronic acid for four years. She said it can remain in the system for up to 10 years, and there was a risk of necrosis of the jaw if the tooth was pulled. She asked what I wanted to do, so I choose to keep the tooth for now. Trouble is, a week later my jaw is still aching and I don't know what to do. What is the worse case scenario if it is removed? Should I go back and risk it? should I get a second opinion from another dentist, or maybe pay for a private consultation. Any advice gratefully received.

Mary

[Hidden]

Thank you Sandra. I will try and contact her at the surgery. Didn’t think of asking for antibiotics when she called although I do believe she mentioned it. Take care

[Barbteeth in reply to Hidden]

I agree with Sandra...definitely get antibiotics

Barb xx

[Hidden]

Hi Cheryl

What a beautiful picture. We love bees and sunflowers - such happy things.

So sorry to hear about your ONJ. It sounds like your dentist is helpful which is always good. I had jaw pain recently and my dentist was quite blasé to say the least about it. It is a significant risk for us on Denosumab I think because we take more frequent and higher doses than those with Osteporosis.

I hope the pain goes and it heals over quickly for you.

It’s been drizzly here all day, but the garden loves it.

Clare x

[Hidden in reply to Hidden]

Hi Clare. Yes I was so happy to hear her voice. She saw me every two weeks before the virus appeared. She didn’t charge me a penny. She really is lovely. I’m sorry you have pain. It shouldn’t happen at all and I would look for a second opinion. Maybe your GP can refer you on. It’s cold and raining in Liverpool today. What a change but the plants etc need it. This photo is one of my favourites. We have seen loads of Bees around our flowers this year. Planet needs them for us to survive. Glad you like the picture.

Take care and get on top of that pain. Denosumab is so powerful.

Best wishes

Cheryl

[Bubbles001]

I have had ONJ for about the last two years. I opted not to have surgery and keep antibiotics on hand in case I get an infection. I also use mouth wash religiously. The bone fell off on one side, which is a good thing, but not on the other. For me, it’s more annoying than painful. My Onc says I will not have Zometa again and it’s been fine. The drug stays in your system 11 years, so I still get benefit from it. My oral surgeon has seen more than 500 cases and says it is not that uncommon. Oncologists are finally recommending patients go to their dentists before going on bisphosphonates. Wish I had. Best of luck to you.

[Hidden]

Thank you. Yes I had a full dental check up and got the all clear to go on meds but two months later I had to have the extraction. Think I may give the Denosumab jabs a miss now although they do ease my pain. I keep using the syringe and mouth wash to clean the socket but after several months from having the bone removed it has flared up again. Every comment really helps me and thank you all.

[viennagirl]

Hi Flowerfairies2. Sorry that you are having trouble with necrosis of the jaw. I don't know what the remedy is but you might consider stopping the shots. But Barb has offered such good advice that you will probably get control of this before it goes any further. I love your photo of the bee in the sunflower. I notice that this is a really wonderful spring for bees in my garden and my wild roses are just so thick with flowers. The air is filled with such a wonderful scent. I had two scans on Tuesday and I am usually sad and miserable after the scans. I just don't like all that radiation flowing in my body. I try to visualize it helping me but it takes me a few days to calm down. About the necrosis. Ask your oncologist if it is wise to continue with the drug that causes this condition. I have been offered the same drug but said no to it. I am trying to build up my bones by taking bone broth and crushed organic egg shells. I don't know if that works but I feel like I am stronger lately. Might all be in my head. Anyway, I am thinking of you and picturing you recovering. Hugs Marlene

[Hidden in reply to viennagirl]

Thank you Marlene. My scan is due 24th and like you I feel down before and after. My Oncologist will be calling lst July. I have decided that I want to stop the injections of Denosumab. Maybe he can offer an alternative. I take Vit D3 and Calcium every day and Manuka Honey 300+ for an semi antiseptic. It heals any soreness in my mouth. I hope you are ok and thanks for your input. I’m glad you have lots of flowers and bees visiting. They are wonderful.

Take care

Cheryl

[viennagirl in reply to Hidden]

Hi Cheryl. I watched Dr. Darren Schmidt an American doctor on line. He is a specialist for people with osteoporosis and he recommends bone broth for bone health. I think you can watch him on You Tube. I have decided against the drugs that can cause necrosis of the jaw and I drink a concoction of bone broth, turmeric, freshly ground flax and chia seeds as well as freshly ground egg shells from Organic eggs. I add a pinch of unpasterized dried garlic powder and some freshly picked chives from my garden. It actually tastes quite good - sort of like soup. I am taking this almost every day to support my bones. I do have osteoporosis and have already lost one and a half inches in height. So my theory is that if I can get my bones healthy I won't have to take those drugs that cause damage. I worry that the drugs might help but they also have the potential to hurt me. So I want to get off them eventually. One of our ladies on HealthUnlocked also has added an integrative medical doctor to her team. I am thinking of doing the same. Although I don't have a lot of money I feel I should treat myself to some good care. Other than that I am trying to eat mostly a plant based diet except I love fish so have kept that in my diet. I also try to have at least one cup of miso broth a day and one or two cups of green or black tea. And I take Liposomal Vitamin C (the kind that comes from Scotland). I sure hope all this makes a difference. I want to cure this illness. I don't just want to keep it at bay - I want to completely banish it. As long is there is breath in me I will believe that I have a chance to be well again. Hugs to you. We are lucky we have each other to share our stories. I am grateful. All of the ladies on this site are such wonderful precious beings who deserve to be healed. Marlene

[Hidden in reply to viennagirl]

Hi Marlene,

Your comment really resonated with me. Like you, I want to heal my body, and hopefully get rid of this disease too. I have heard of the benefits of bone broth too in promoting bone health for those of us with bone metastases, but have hesitated to try it as I can't normally stomach things like that. Seafood, bones, skin and fat make me feel sick, so unless there is a bone broth capsule I can take I may have to pass on that! I take Adcal D3, which my oncologist prescribed, I have zometa infusions every 12 weeks and I take a vitamin D+k2 spray each day. I have read that it blocks a certain pathway (can't remember which) that would otherwise promote bone metastases. I also try to eat lots of cruciferous vegetables and exercise most days to help strengthen my bones.

I would talk things over with your oncologist before you come off the drugs though, Marlene. You don't want to compromise your bone health if the drugs are doing their job. I plan to keep going with my integrative approach and continue to monitor things.

As to adding an integrative doctor to your team, I would recommend it. I did so over a year ago and it has made a real difference. I believe in standard of care treatment, but it is not enough for those of us with metastatic disease. It can help stabilise our condition and keep the disease at bay for a while, but after a while the drugs will stop working. I use standard of care treatment, off-label drugs and supplements, diet and exercise to help me.

If you are interested in trying anything new, I would say it's best to obtain professional advice and guidance that is tailor made to you and your particular diagnosis. It is not a good idea to try and figure it all out on your own. I have undergone lots of different tests and procedures (some done on the NHS for free, and others ordered privately by my integrative doctor) and based on those results I have been told what would be most suitable for me to take. Even with my results, I have still had to tweak certain things that my body could not tolerate and replace them with alternatives that were easier to handle. So there is no real "one size fits all" when it comes to tackling this disease. We can see that just from how differently we all respond to treatment. Some of us develop quite bad side effects, while others do not.

I am off to the hospital later on this afternoon for my CT scan.

Take care,

Sophie

[Teddielottie in reply to Hidden]

Hope it goes well today ! Take care !x

[Hidden in reply to Teddielottie]

Thank you, Teddie.

Sophie x

[SeattleMom]

HI, FLOWER!

Thank you for the beautiful photo!

I'm just curious about jaw necrosis in general. Has anyone else suffered this side effect from Ibrance. I've been taking Ibrance for about 2 1/2 years now and just started noticing some soreness back in the lower wisdom tooth area.

Flower, is this how your symptoms of necrosis started?

Thanks for any info!

Linda XXOO

[laurac1014 in reply to SeattleMom]

The ONJ is from the Xgeva, a shot of bone strengthener. It’s not from the Ibrance.

I’m so worried about this myself. I only took it every 3 months but may stop all together.

Glad to hear Ibrance is working for you !

[Hidden in reply to laurac1014]

Yes, Xgeva is Denosumab. ONJ is not nice but I’m stuck with it now unfortunately. I may stop it to but it really helps with my bone pain. Difficult decision🥺

[Hidden in reply to SeattleMom]

Hi, the ONJ is from Denosumab. I had a tooth extracted whilst having the injections and the socket didn’t heal. It caused slight Necrosis in the jaw bone and has caused it to splinter. I had five small pieces removed last year and another small piece of jaw bone has pushed through the gum and needs to be removed. I had an injection a week after the extraction and I shouldn’t have. It wasn’t told I should come off the injections six weeks before dental work and stay off it until the gum had healed. An inexperienced dentist, Oncologist and Cancer Nurse.

I had the tooth extracted July 2019and I’m still suffering.

It’s not the Letrozole that causes it.

Cheryl x🤔

[Hidden]

Hi Linda. It started after a tooth extraction. The socket wasn’t healing and after several months my dentist sent me to a specialist who found 5 very small fragments of loose jaw bone. It’s a year on now and another piece of bone has appeared and the area is sore. ONJ can start without an extraction but that’s quite rare I believe. Get your tooth looked at ASAP just in case. Mine was caused from Denosumab injections. They do come with a warning of ONJ. Hope this helps. Take care