July 24, 2015

Mouth pain

I've posted before about ONJ (osteonecrosis of the jaw), a rotten side effect of taking too many bisphosphonates to strengthen my bones over the years, or in my case, too much Xgeva.

For the past ten days I've experienced annoying pain in my ONJ spot of exposed bone on the roof of my mouth. I saw the dentist, and she wasn't sure what might cause that pain. She doesn't think I need another root canal. The ONJ spot hasn't changed in appearance. So Dr Amy spoke to Dr G and together they decided I should have a CT of my mandible (jaw).

I had the CT and it revealed -- NOTHING. No tumor, no new ONJ, no nothing. But I still have the pain. I changed pain meds from Vicodin to fentanyl patches left from earlier this year. The fentanyl made me woozy and high at first; I didn't really sleep last night. But today I'm not woozy and the pain is gone. I see Dr Amy again next week.

I hate to judge myself on what to take, but since I have the fentanyl on hand and Dr G had prescribed it, I'll take it. And it works!


  1. Jill you made my day. I am in Australia, Perth and it was so refreshing to find such a honest story. Thank you so much. I am struggling with stage 4 breast mets and most of things you write about made me feel validated again. I struggle terrible with guilt but I just cannot do much most days with this dreadful fatigue and feeling sick and then oh my god you wrote about the openings in your thumbs and that was it for me. Yes Yes Yes. I so wish there was more information out there and more support and understanding. You have helped me so much and thinking about doing a blog as well . Keep as well as you can and each day is a new day sometimes worse than the day before but sometimes better! Hugs Sarah

  2. Jill thanks for sharing your ONJ story. I'm doing the dental rounds too. I had some superfluous bone grow horizontally in spikes on the inner side of a molar. Creepy! Oral Surgeon sheared them off, so far no re growth. But I still have pain and seems to be in jaw joint not as much the tooth. Oral surgeon is sending me back to my dentist. Oh well...I'll keep doing the dance. But no Bisphosphonates since Jan, just in case. Gail (almost 12 yrs living with bc mets)

  3. Gail,

    My oncologist took me off Xgeva and bisphosphonates several years ago, after I got ONJ, likely from Xgeva. Then I started Aredia again after more ONJ and a broken rib. I get Aredia (the oldest of these drugs) once every 2 months, just to keep my bones safe. I see a specialty dentist too. And in the last 2 days my chin has been numb. So I'll see the dentist again on Monday.

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  5. Mine would hurt when it was infected and my immune system would get low. Do they have you on antibiotics? Wondering if you may need a round of them if you aren't on them all of the time (I was on them 24/7 until we did surgery and got it to close up).