possible ONJ-- seeing an oral surgeon for the first time tomorrow morning

[PJBinMI]

My dentist referred me to an oral surgeon as I have a small area of exposed bone behind my right lower molar, and have been on meds for bone mets (Zometa first, now Xgeva) since diagnosis in 2004. I've done well in terms of the bone mets and the women I have met who've had ONJ have generally done well, but I'm a tad nervous about this appt.

I just started my second round of oral chemo, Xeloda, two weeks on, one week off. I get those pills from a specialty pharmacy and there have been delays with each of these deliveries! First delay was weather related and just delayed my starting the first round by a day. But this time, the delay was related to very unclear communication between my onc's team and the pharmacy and the "week off" ended up being 9 days rather than 7 days. I'm hoping this will not be something that happens every round! So I'm feeling more stressed than usual! Frustrating to have to make repeated phone calls. listening to recorded messages, being on hold for what seems like forever. etc when I'm tired and far from my best!

First time I've looked on line to find out what other cancer treatment centers are available around here! I live in a rural area and the drive to the cancer center I've been going to is about an hour each way. Two other options within similar distance, one in nearby other state. Don't really want to switch...most of my physicians are in the same medical system with a couple of exceptions.

Needed to vent! I know I'm not the only one here who's more easily frustrated than when healthier!

[luckysmom13]

I had ONJ due to XGeva. I lost about a 1cm area of bone over 2 upper molars. I had repeated infections for a while. After the bone came loose and was removed, I was left with a hole over the teeth, with exposed roots. Thankfully the soft tissue filled in and no further loss occurred. ONJ is best left alone if possible. My oral surgeon said the more you try to work on it, the more you stand to lose. I used Peridex mouthwash and periodic antibiotics.

The exposed bone smelled terrible, so make sure you've got plenty of gum or mints.

I wish you well!

[Pachira]

I too had a small area of exposed bone after being on Xgeva 5 years. I kept gargling with salt water and my oral surgeon had me follow up with him in 3 months. I'm glad to say that the gum healed over but i came off Xgeva and my Onc won't put me on zometa or xgeva again.

[love2golfwell]

I'm so sorry you are experiencing this. I hope you get the answers you need and a good solution. I know you have been on this journey for a very long time. You are an inspiration to me for your strength and determination in this fight. I am sending you prayers and hugs.

[GramorNonna]

I have also had this issue after taking Zometa. My dentist sent me to an oral surgeon who referred me to a specialist at the Medical College of VA. He is watching the area and holding off on any surgery at this point because it can cause other issues. I am using an antibacterial rinse and babying it along. I was taken off of the Zometa to see if the bone heals at all. Good luck on your journey!

[Mumberly]

I’m sorry to hear this. I know what you mean by how differently we react to things when we’re not feeling well. And how frustrating it is to have to navigate all the phone calls and delays.

And I ditto what love2golfwell posted. Word for word 💜

Take care. And I wish you all the best with this.

Kim

[TammyCross]

And then there are those of us who haven't done so well. I was on Xgeva. All my bone mets went dormant. I got an infection, and ended up with necrosis. Had to have surgery, lost three molars in back on one side, and one toward the front on the other side. The periodontist wanted me to have two root canals to stop the progression, but it was too late. He cut out the bone and those 4 teeth went with the bone. After 10 months off Xgeva, I was able to get a denture. (No implants because there is no bone there.) The denture is pretty uncomfortable because it has to go from left front to right back, and they don't want to put pressure on my other teeth since I have bone loss. It was, I thought at the time, the worst extra thing that has happened because of my mbc. Now, over a year after I got off Xgeva, it looks like I have incipient bone mets. The Xgeva really worked, but I cannot take it or the alternatives again. Hmm.