Zometa - Issues mouth & jaw

[Reallyno]

I am new here but have a question I had one Xgeva injection then had mouth issues and ended up losing a tooth, then they held off for 2 months and gave a Zometa infusion. First one (12/18)I had sore muscles, mouth pain and jaw pain for a week after, better with 800mg motrin every 4 hrs. I had another infustion 1/19 after 3 days I noticed my lip go numb and then to middle of my chin still numb going just over week now lip is no longer numb just chin and there is like a lump in my jaw that they say is just fluid. Has anyone else had issues like this? other wise the Ibrance & letrizole working wonders last scan some of the bone & lymp tumor gone and no growth with the large one on chest wall, the side that was radiated. All the folks that work at the cancer center I go to call Ibrance the greatest thing to happen for Breast cancer in years and I have to agree my the DX less scarry.

[BakeryBetty]

I think the necrosis of the jaw is much more common than they let on. My oncologist did not warn me that I can remember. I had a tooth pulled and ended up with jaw necrosis. :/

[Reallyno in reply to BakeryBetty]

Thank you, I will call them tomorrow. But since it cost $40 every time I walk through the door i don't want to go if they say well nothing we can do☺

[BakeryBetty in reply to Reallyno]

The money part of treatment is just as draining as the treatments.

[LisaT23 in reply to BakeryBetty]

Hi,

What did they do for your jaw? did it heal ok?

I had tried zometa for 2 months but had a high fever for a week each time, so switched to xgeva.

I had a cracked tooth and my oral surgeon refused to pull it because of the xgeva/zometa.

Instead I had a root canal and then he cut the tooth down below the gum line. It is still pushing it's way out, like a baby tooth. He says he will not pull it because he does not want to expose the bone. As long as it doesn't hurt or get infected, it can work it's own way out. Hopefully filling in behind it.

Lisa

[BakeryBetty in reply to LisaT23]

I went off the meds completely. My dentist sewed the gums shut over the exposed jaw area. Eventually things seemed to heal up. He makes sure to give me gentle cleanings.

[LisaT23 in reply to BakeryBetty]

I am so glad it healed.

[Andersl in reply to BakeryBetty]

I agree. I think it is more common than the consultants report.

[Fpmeehan]

It’s common knowledge amongst oncologists that Zometa can lead to jaw bone loss and you should have been told that before your first treatment. My oncologist removed that drug when I complained of jaw pain. He didn’t want to risk any complications with Zometa.

[1998withStage4]

I had ONJ after several years on Aredia, an ancestor of Zometa that was given monthly over a 1-2 hour infusion. I lost a molar not because of a problem with the tooth, but with the underlying jaw bone that was dying and causing significant pain. But the jaw issue wasn't discovered until after the tooth was pulled. My jaw bone was scraped clean of the dead cells and then a bone composite was placed in the spot. I tried to get the tooth replaced using a dental implant but the implant would not set in the damaged bony area. So I have a bridge. Since then, I've had some issues with bone fragments erupting from my gums even though I stopped the Aredia about 10 years ago. It takes a long time for bisphosphonates to clear from your system.

[Reallyno]

Thank you all for your responses. Very helpful. I am not going to do this part of treatment any more.☺

[laurac1014]

I have mets to ribs and sacrum. I don't feel anything from ribs, tailbone hurts after sitting for a long time, stuff I can live with. My oncologist said they may add Xgeva after being seen by my dentist. I am really worried about taking this drug, I feel I will be one of those this jaw problems. I read that this happens twice as much to those with breast cancer. I'm not sure what to do.

[Tm7777]

When i first started was given xgeva. Then insurance company after 6 months decided to switch to zometa. I had 6 treatments . Then had pain in my leg the zometa ate a hole in my femur. Then i had my gum bone push out of gum. Then diagnosed with ONJ of the jaw. I stopped taking treatments after the femur ordeal. It was 3 month's later the ordeal with jaw. Its been over a year had more bone come out of gum! No one told me about these side effects before treatment. They will not pull any teeth out of my mouth because the oral surgeon sai d my jaw would come out with the tooth.!!

[laurac1014 in reply to Tm7777]

I’m so sorry to hear you had to go through all that 😿. I hope you finally got some relief.

[Reallyno]

TM7777 I am so sorry to hear about what happened to you. I appreciate you sharing you story, you have helped me decide what I want to do about this medication. I am done with it. It's bad enough we have cancer but to add new issues, femur problem OMG it's too much. I hope that your journey gets less bumpy from here on out.

Bless you