Osteonecrosis of Jaw (ONJ)

Hi!

I had breast cancer late 2008, had a mastectomy and all the chemo etc covering 5 years. Then in 2017 I was diagnosed with secondaries on T12 spine (treated with cyber knife successfully), and a small lymph node near my heart (radiated). 
I'm now on Letrizole daily and up to 4 months ago was on palbociclib (3 weeks on, one week off), and Denosumab injections (monthly then 3 monthly). 
After a check up at the dentist due to pain caused by a wisdom tooth, I was told I had an open ulcer which after a visit to the local Maxilliofacial Unit, have been diagnosed with ONJ. 
At the moment I've got an infection which I'm just about to have antibiotics for as the glands in my neck (same side as ONJ), are swollen and extremely painful.
I'm finding difficulty finding information on any treatment, long term prognosis etc so thought I would ask if anyone has any information they'd like to share? 

Thank you!

  • Hello DeeDee52

    I'm sorry to hear that you've recently been told you have osteonecrosis of the jaw. It's obviously a difficult time for you at the moment but hopefully, we can help with some advice and information. 

    As you probably already know denosumab can cause damage to the jaw bone and one of the common side effects of palbociclib is mouth ulcers and problems with the gums. It's good to hear that you've been seen by the maxillofacial specialist. Hopefully, they will be able to support you through this. 

    We do have some information about ONJ on our website which you may find helpful but I'd really encourage you to contact our team of nurses. I'm sure that they will be able to help with further advice, information, and support. They're available Monday to Friday 9 am to 5 pm on 0808 800 4040

    I do hope that things settle and improve for you soon. Let us know how you get on if you're able to. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Many thanks Jenn, and yes I will let you know how things go.