Medication-Related Osteonecrosis of the Jaw

sharethehope

Has anyone developed med-related osteonecrosis of the jaw because of Zometa & Xgeva use? I'm going to have it taken care of this fri. Hope all goes well.  Been heading for an emotional downturn. gemzar & Carbo quit working after only 6mo. Haven't had much luck with treatments since becoming stage !V or whatever it is. Starting Taxol this wed. &  have heard & read differing outcomes. Hope mine it good & long-lasting. Don't have a wig yet. Understand I might not loose my eyebrows & lashes. Think I would rather not loose head hair even though I have shed a lot. April

exbrnxgrl

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!

pwilmarth

I haven't but, but my MO wants to start after I have some dental work done - which is one of the risk factors for osteonecrosis

ABeautifulSunset

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

sharethehope

Dear Stefajoy thanks for reply. Already have dead bone in jaw. Found a good oral surgeon & he says he can "pop" it off w/little or no blood loss. (low plasma count) He also has a triad of drugs he uses to rid the problem. He's worked w/lots of cancer patients. Go this Fri for procedure. Hope goes well. Thanks to other ladies also. Don't know what will happen with the xgeva. By the way for those who do get this, yes it does hurt even though "dead",  bone its attached to live bone, teeth can hurt in area, & you can have an infection. Tell onc right away & get medical help.  Thanks for the input. Hope to continue on xgeva because other bones in my body already have problems & that triad of drugs from oral surg will keep any further problem from occurring. Hope you all have success & happy thanksgiving. April

ABeautifulSunset

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.

sharethehope

The orth said it was about to detach which is why he feel he can pop it off, He does all these surgeries for a large area around & says this triad of drugs really works. so we'll see. I'm expecting it will hurt anyway even though its not the brutal surgery usually done.

stagefree

good luck with it April

car2tenn

I am in the middle of fight with ONJ.

I have seen a dentist, an endodontist and the head of the oral surgery division at a respected hospital.

The dentist recommended me findingHyperbaric therapy treatment. I am almost have way through 8 week (2 hours a day) M-f treatment. I have an impressive case even though few people have this type malady. I got the big deal. I am trying to avoid surgery which would take out 2 molar lowers and the bone under them. So far the Hyperbaric Oxygen Therapy has been successful for me. We will evaluate in a few more weeks/ Carolyn from Music City

ABeautifulSunset

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

sharethehope

Hi Carolyn, Sorry your osteonecrosis is so devastating. My ortho surgeon gave me a copy of "Diagnosis & Staging of Medication-Related Osteonecrosis of the Jaw".   Is yours from medication or radiation? My doc said he would be glad to speak with you if you wanted to call him. He did teach for a number of years & edits books on ortho related diagnosis still. He would also be glad to send you a copy of the above book. He has probably had a hand in writing or editing most of the books that your docs read. This book is the latest info about med related osteonecrosis of jaw.  Had my bone nipped off Fri - no pain. Very quick. Will have more filing done when I go back next Fri. On the triad of meds he uses which are also recommended in the book. If you aren't on the medicines maybe you could check with your docs to get on them. Vit E & antibiotics if your interested can tell you more. Shouldn't interfere with your current medicines.  They are to prevent any further problems & help the situation now. Basically bring blood back to the bone. Let me know how you are. I'm concerned.  April

  

mirryp

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?

ABeautifulSunset

Mirryp, I resumed bone strengthening treatment after my ONJ had been healed for a year. I'm back on Xgeva. Need it for my bone mets. What is the prognosis of your ONJ? Do they expect it to eventually expel the dead bone and heal? That's what mine did. My body pushed out the dead bone as though it were a foreign object. Once it was out, the healing began. My case might have been easier than some.

MargaritaMS

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!

sharethehope

Ladies, I am posting the name & ph # of my oral surgeon with his permission. Carolinas Center for Oral Health, Dr. Haug, 704-512-2110.  He is in Charlotte NC & works with many patients from Levine Cancer Institute. The triad of meds he uses are: Vit E,  pentoxifyllne er,400mg & amoxicillin 500mg. These are the meds mentioned in the book "Diagnosis & Staging of medication related Osteonecrosis of the Jaw."  The hyperbaric treatment isn't for medication related osteonecrosis only radiation related osteonecrosis. Dr. Haug says he'll be happy to speak with any of you & send you a copy of the above mentioned book. Yes of course you can return to Xgeva.. Seems so necessary for those on chemo.  please call him with your questions its free info. April

ABeautifulSunset

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

MinusTwo

ShareTheHope - thanks for the reference. I couldn't access the study at NCI so I will probably call him. Do you know if he recommends Vit E as a preventative measure?

Sorry to post on this Stage IV thread but chemo did a number on my bones. The doc is trying Prolia first.

sharethehope

Minus two please feel free to call the Dr. He'll answer your questions & send you a copy of the book. Don't know about vit E pre treatment but it is a part of his post treatment. You'll probably never develop osteonecrosis. Best of luck.

MinusTwo

Thank you April.

akshelley

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

MinusTwo

Oh no Shelley. Did you call the doc that ShareTheHope recommended on Dec5th on this thread?