Osteonecrosis of the Jaw

Chrissy50

Received my stage IV metastatic breast cancer diagnosis (in the bones) in May 2018. This after 16 years of "cancer freedom". I was put on Faslodex shots, X-geva shots and Ibrance. After much trial and error with the dosage of Ibrance, I am now taking 75 mg. One week on, one week off. This has worked for me. All of my scans have shown no progression. BUT (always a BUT isn't there) the X-Geva shots have done a number on my jaw. I had to have two teeth pulled, and no one seemed concerned at the time of the effect X-geva has on your bones in jaw. BUT now I have osteonecrosis of the Jaw, which from what I read is very rare. This hole is huge and bone can be seen. Even my dentist and Oncologist aren't real sure about the ins and outs of osteonecrosis. Went to see an Oral Surgeon and his recommendation is conservative monitoring treatment. Antibotics if needed. Good oral hygiene and dental mouthwashes. This thing hurts like hell, especially at night. There is a constant taste of blood in my mouth, oozing at night and of course cannot chew on that side of my mouth. I have since stopped the X-Geva shots however the damage is already done. Has anyone dealt with osteonecrosis? If so how do you manage. What are you doing to keep pain at bay.

Lee64

I have ONJ too. I had an abscessed tooth which was removed and then the gum didn't heal. The oral surgeon ground down the bone and pulled gum tissue around it but it still didn't heal. Now I am using a prescription mouthwash and will see him next month, It is not healing and I don't know what the next step will be. Thankfully I am not having a lot of pain but chewing is difficult. In the last week I developed a sore spot on the other side of my mouth where I have missing teeth and wear a partial plate. I haven't been wearing the partial because the gum was so sore and irritated; I hope this isn't ONJ too. I had been on Xgeva for about 6 months when this started and my oncologist stopped the shots right away. It is my understanding that Xgeva stays in your system for a very long time after you

I hope you keep posting about your progress, further treatment for this. It sounds like it takes a long time to resolve and I would be interested in hearing from others who have dealt with this. I had almost 10 yrs. of "cancer freedom" before my stage IV diagnosis and I am also on 75mg. of Ibrance 3 wks on and 1 week off. Started my 12th cycle today. I hope help is found for your pain; a painful mouth is so hard to deal with on top of everything else.

Momchichi

I was just diagnosed with ONJ and received the same advice from my oral surgeon- monitor the exposed bone & use chlorhexidine gluconate 0.12% solution. It's generic for peridex. Mine was really painful for a few weeks but now just hurts if I try to eat a chip or other sharptype food or accidentally jab the area. There is a Facebook group for ONJ started by a bc.org member that may help with pain relief ideas: https://www.facebook.com/groups/1488837324527377/?ref=share

Momchichi

I was just diagnosed with ONJ and received the same advice from my oral surgeon- monitor the exposed bone & use chlorhexidine gluconate 0.12% solution. It's generic for peridex. Mine was really painful for a few weeks but now just hurts if I try to eat a chip or other sharptype food or accidentally jab the area. There is a Facebook group for ONJ started by a bc.org member that may help with pain relief ideas: https://www.facebook.com/groups/1488837324527377/?ref=share

Chrissy50

Sorry for us having to go thru this ONJ stuff. I asked to join the Facebook group you recommended. From what I read it’s rare (????). And not too much info out there by way of treating this available to us. At least there seems to be fellow ONJ sufferers to at least talk to. Keep me posted on your progress and I will do same. Have they ever given you antibiotics? I understand that’s part of the treatment plan. I have taken some but only when jaw is swollen and bloody. They do seem to help some. Dr not to keen on giving them out even tho your mouth is full of bacteria. He says it’s “regular mouth bacteria “? Well Ibuprofen helps me. I take 3 pills every 5-6 hrs. I pray that I don’t wake up too often at night. Hard to get a good nights sleep. Take care of yourself!

Chriss