Medication-Related Osteonecrosis of the Jaw

sharethehope,

I believe we've had a few members who did develop ONJ, but it is still a rare side effect. That being said, make sure you get any needed dental work done before you start. Good luck!

That would be me. But that wouldn't stop me from recommending Xgeva or Zometa for bone mets. Just because I got it doesn't mean you will. Side effects are like that. I would be happy to answer any of your questions about it.

Stefanie

it's probably too late now but I wouldve recommended a second opinion before doing this bone removal procedure. My specialist said you can't remove the dead bone because the act of going in to remove it actually causes the ONJ to spread and get worse. I literally had to wait for it to detach and fall out (like a tooth falls out) on its own. It was a horrible disgusting 6 months. I hope your guy knows what he is doing because that sounds a like a much easier route than the one I took. Also, it's been three years so maybe there is new stuff now.

Good luck and please keep me posted on your success. I may need it in the future.

good luck with it April

Wow. Carolyn. I'm so sorry you are going through that. I know it really sucks. I hope your hyperbaric therapy allows you to keep the infected part of your jaw. I am missing one molar on top and the bone above it. Luckily it's near the back.

Best of luck.

Stefani

I developed osteonecrosis along with infection after 5 years of zometa treatment. The diagnosis was 4 mos. ago and I've seen no improvement. Surgery not an option because it's upper jaw and they fear perforation of sinus. Been on antibiotics and pain meds non stop. Aside from the pain I struggle with flushing of the cheek following by swelling that when it goes down looks bruised so my vanity has taken a huge hit. I can open mouth only halfway making eating a challenge and have lost weight that I needed. I'm going to mention the hyperbaric treatment at next appointment. Long term I worry about having had to stop treatment for the bone mets. I was doing so well and now my hip and back are aching. Has anyone resumed treatment?

hi there,
Can someone please tell me what your early symptoms of ONJ were? A few weeks ago I started getting a lot of sensitivity in my teeth. Mostly my uppers on one side. I went to dentist who did X-rays and found that a filled upper molar on that side had a crack in it that she said needed to be crowned. She didn't see any other problems. So, I had a temporary crown done and am waiting for the permanent crown to be made. Unfortunately, I still have the sensitivity and have also now noticed a bit of ache in my jaw. Not all the time - it comes and goes but I'm worried that this is a bigger problem than just the crown. I haven't had Zometa since about June. I've been getting it every 4 months but we've held off so I could visit the dentist. How did you know you had ONJ? Appreciate any insights you can share. Thanks!

share the hope, Thank you for sharing that information. I wish I had it 4 years ago.

Margarita, a crown is better than a pull. I cracked my tooth and some idiot oral surgeon pulled it, knowing I was on Xgeva. That area never healed, and the ONJ began. So, my symptoms would be different from yours.

It may not be ONJ, but if it is, the book Share the hope's doctor wrote looks very informative. And if you are on the west coast, there is a great doctor who treated me at UCLA.

Wish you luck and NO ONJ.

Stefanie

So, I have developed ONJ on the right lower jaw. I had a tooth extracted in October and thought it was healing. But I now have a tiny piece of bone sticking up through the gum and the gum is pink, not red. The skin hasn't pulled over and healed it shut. Now, the last two days it has decided to swell up and start causing toothache type pain, all the way to my ear. It hurts so much. I have Chlorahexadine swish and spit but I hate using it because the mint taste burns my tongue/mouth. (I have been using kids strawberry toothpaste for three years now because of chemo mouth.)

Do any of you have any further recommendations to help relieve the pain and/or treatment? I'd much appreciate any advice. I'm also alternating hot packs/cold packs. Help!

Thank you.

Shelley