Spontaneous osteonecrosis of the jaw

Living with secondary breast cancer Treatments and medical issues
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I was having denosumab injections up to May 2018 as my oncologist feared I would develop bone mets as there were a few suspicious areas they were concerned about. Oncologist said it was a precaution.

I had no dental treatment but started to experience jaw pain. I mentioned this to my oncology team and they referred me to a maxillo facial consultant. He confirmed spontaneous osteonecrosis of the jaw. By this time I had exposed bone and was in extreme pain. Fast forward 4 months from then and I am not having denosumab any more - so am having no treatment apart from anastrazole, for the cancer. I am on doxycycline and mouth wash for the osteonecrosis and no longer need tramadol for the pain - so that’s good. However I’ve now developed a second area of exposed bone, so even though denosumab stopped in May my jaw is still deteriorating.

Oncology are leaving max fax department to it, so this leaves me wondering what the future holds.

No one knows the prognosis and I read on this forum that others go back to denosumab, I’m not happy to do that. 

Im upset that even without denosumab my jaw is still deteriorating. Has anyone else had an experience similar as I feel a bit like a medical test case - I’ve had more student doctors looking at my jaw than you’d ever believe! I’m having monthly appointments to keep a check on my jaw but no one is now worrying about the bone mets that they were so concerned may be there before. Thanks for reading my long post.

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Hi Janey

How horrible for you.  I know a few ladies have had ONJ but is sounds like yours is particularly bad.  I do hope the pain subsides and there is something that can be done to prevent this happening again.

Nicky x

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Hi Janey 

I cannot sympathise enough.  Other members have been bored in the past by me ranting on about this.  Here’s my experience - I hope it helps.

I was put on Zometa (another type of bisphosphonate) in 2013 when first diagnosed with Stage 4. I have always been treated at one of the main, cutting edge cancer hospitals in the country, if not the world (according to them). In 2016 I was referred to a ‘dental specialist’ at the hospital because my teeth were becoming loose and I was in agony.  She took a five second look and pronounced that this is what happens if you’ve been on Zometa for too long.  So should I stop it?  Oh no, it’s such an effective treatment for bone mets.  What’s a little toothache when we’re saving your life?  In 2017 my cancer mutated and I was put on a drug trial, overseen by an eminent professor, which still included Zometa.  As recently as last June the dental specialist wrote to my GP insisting I didn’t have

Necrosis and should continue with Zometa.  

 

I can’t tell you what the last two years have been like.  My dentist washed his hands of me - said it was down to the hospital.  The GP very reluctantly gave me Amoxicillin but only if I insisted.  It made no difference.  One back tooth came out leaving another wobbling badly.  The gums were inflamed and infected - the loose tooth was like a dagger.  The ‘experts’ told me to keep it in.  The oncologists didn’t care.  Eventually the second tooth fell out.  My only friend was my hygienist who was terrified she was going to cause sepsis but kept on because she felt so sorry for me.

 

I was so miserable I stopped all cancer treatment.  I can still see the shocked expressions.  I had no interest in living with this misery.  I can’t emphasise enough how awful it was.  I was on strong opiates which meant I was severely constipated.  I couldn’t eat anyway and lost 4kg.  And yet they thought the cancer treatment a success. 

 

But there is a happy ending - although very expensive.  In the middle of another tear-stained, pain-filled night, on the floor, clutching my husband, we decided to go private and blow our savings.  We found a maxillofacial surgeon locally.  He looked in my mouth, confirmed it was, indeed, necrosis but first of all said he needed to make me comfortable and wrote a prescription for an antibiotic called Clindamycin.  Apparently penicillin isn’t effective on necrosis.  Within three days the pain was gone. A week later, he operated, cut the dead bone away, sent a biopsy to make sure it wasn’t cancer (thankfully it wasn’t) repaired the gum and gave me intravenous antibiotics. Job done.  Fine now.

 

There was a lot of head shaking on his behalf about what I’d been through but he said most doctors, especially oncologists, still don’t appreciate the link between bisphosphonates (any kind) and necrosis of the jaw, especially in post-menopausal woman whose teeth and gums will be suffering from losing oestrogen anyway, never mind the impact of cancer drugs. They are also victims of their own success because the longer we all survive, the more damage can be done by the drugs. In fact, the dental specialist at the hospital’s comment was, “at least you’ve lived long enough for your teeth to fall out”. 

 

So here’s what I’ve learned - if you’re in pain, it’s probably caused by infection which is caused by blood not getting through the dead bone.  If nothing else, treat the infection with proper antibiotics. If penicillin isn’t working, demand another type.  It cost me £3,500 but it was worth it. I hope you can get similar treatment for nothing, as we’re supposed to. 

 

You’ve probably dozed off by now - sorry.  Good luck and if you ever want to compare notes, don’t hesitate to get in touch.

x 

 

 

 

 

 

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I am exactly where you are at this time. My oral surgeon just couldn’t believe I had ONJ without having intravenous Prolia . I was in tremendous pain so he sent me to an infectious disease doctor. He gave me strong antibiotics and I am much better. I see him for a follow up on Monday. He has experience working with ONJ patients! I will find out what is next then.  

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Hi I am new and don’t know where I can post this new thread. I have been on Prolia for several years twice a year. With no issues up until now. I have been to 4 different types of dentists last one being oral surgeon who said it’s ONJ it’s a small round white circle causing me terrible pain and he said there is nothing he can do and that it will close up on its own after Prolia out of my system  i Am going out of my mind with the pain. It’s constant. Other drs have prescribed mouthwash . Topical creams for mouth even an antibiotic and nothing has alleviated pain. It seems your Dr at least gave you a painkiller  I don’t know what to do I don’t want to be told live with it until it goes away