Osteonecrosis of the jaw

I’ve had secondary breast cancer for 8 years and was having monthly IV Zoledronic Acid. After 5 years I needed IV chemo. I developed a gum infection and a nasal polyp while I was on IV chemo. Two upper molars became loose and despite antibiotics they were too wobbly to stay in my mouth. The osteonecrosis developed after I’d had these two teeth removed. I had no pain, but I could feel sharp edges of dead bone with my tongue. Fortunately I was referred by my dentist to the maxillary facial surgeon at my hospital. I started on Amoxiclav TDS and every 3 months he was able to tweak off small bits of dead bone. Finally after a year of antibiotics and treatment all the dead bone has gone and my gum is healing up. I am glad I was referred to him as I don’t know if my regular dentist would have given me the same excellent treatment. I now make sure I see the hygienist every three months to make sure this doesn’t happen again. I urge everyone on bisphosphonates and chemo to see a hygienist regularly and avoid having to go through all this.

I am so glad it has resolved for you now.  Thanks for the reminder re dental health.  Sending hugs xx

Hi Alijess,

Thanks for sharing your story and reminding us about the dental complications that come with having bisphosphonates.  I am so glad to hear that you had great care from your dentist and maxillo-facial department and that your jaw healed xxx

Hi Alijess, thanks for posting this. I had a tooth out at a covid centre at the first lockdown and it still hasn’t heeled properly. I too am seeing a maxillary facial surgeon at my local hospital every three months. He told me to book in with a hygienist every three months which I have done. I have had the dead bone shaved by the surgeon and it was a success and he said my tooth is just healing slowly but I will be prone to infections.  I last saw him in October and have since had a course of antibiotics from my own dentist as I have had further infections. I am paranoid I will lose other teeth. I still think I have an infection now but am leaving it until 29th Dec when I am due to see the surgeon at my local hospital again. I do feel he knows more than my dentist but the hospital told me to go to my dentist last time I had an infection as it would be quicker for me.

i have just started on cape, was worried about side effects but to be honest my tooth issues are worse than any side effects I have had so far. 

It is good to know things can be ‘sorted’ albeit over time. I just wish it wasn’t  so long winded. I have been on denusonab monthly for 8 years. It was stopped for awhile when I had my initial tooth issues. 

just thought I would tell others about my experience… Karen x

Hi AllieJess,

I too have osteonecrosis, (despite having a tooth out in hospital by a maxillary surgeon.  1% chance he said!  And I have excellent dental hygiene!)

anyway, I had no idea you could have the sharp bone trimmed, can you tell me who your dental surgeon is?  Where did you have it done? I have had a sharp bone sticking out of my gum for nearly two years and no one has ever mentioned this to me…

my other tip to everyone  is get your teeth checked before you start the bisphosphonates.  No one at the hospital told me of the risk and I had a crappy tooth which was obviously going to cause trouble, it had been patched up for years.  It got infected a week after my first dose of bone drugs

could have been completely avoided…

thanks, Rusty