jaw issues xgeva / zometa

[LisaT23]

Hi,

I was on Arimidex 1/2016-12/2017 till it stopped working. I was switched to Faslodex 1/2018 and Ibrance 4/2018. Tried Xgeva 4/2017 but had jaw/ ear pain the first night, was a bad ear infection. Switched to Zometa for 2 months but it gave me a high fever for a week each time. Went to the oral surgeon 7/2017 and it turned out I had cracked my left back top tooth in half (probably the 1st night of Xgeva due to clenching my teeth). The oral surgeon wouldn't pull it because of the zometa/ Xgeva, so I had a root canal and he cut the tooth below the gum line. Started Xgeva again 10/2017 for 2 months. The tooth started to push its way out, and was cut back again in January 2018. I had a root canal on the top right back tooth at the same time and it was also cut below the gum line. Went back on Xgeva in April 2018, May 2018, and then every 3 months, last dose December 2018.

Well the tooth on the left was bothering me last month so I went back to the oral surgeon. Turns out that the jaw bone was exposed around that tooth. He spoke to my ONC and they decided that I will not have anymore Xgeva, Zometa or any other types of these drugs.

He then sent me to another doctor that is dual certified as a MD and oral surgeon. This DR specializes in jaw reconstruction. He was the chief of oral and maxillofacial surgery at the hospital for 15 years. This Dr pulled the tooth that was bothering me, put me on antibiotics and prescription mouth wash. I will see him for a follow up next week to see how it is healing. He says that in about a month he wants to do a debridement of the dead bone probably in the operating room at the hospital. Scary. The girls in his office say that they see this a lot with these drugs. They say it is a double edged sword.

Here I am all focused on my PET scans and tumor markers ( which have been stable, Thank God) and now I get hit with this. Crazy.

sorry for the rant,

Lisa

[Sebina]

Hi Lisa,

Sorry you have to go through all this!

I’m on xgeva since April 2016. I had tooth extraction and the oral surgen and oncologist decided to stop with xgeva 3 months prior and 3 months after surgery. I didn’t get antibiotics they told me I don’t need one! It was 4 months ago and everything went well!

I hope everything goes well with you!

Sebina,

[LisaT23 in reply to Sebina]

Hi Sebina,

I wish that the oral surgeon had pulled this one back in July 2017. I had only had 1 dose xgeva and 2 zometa before that. Instead they cut it down to leave the bone covered. When it started pushing it's way out, tissue was filling in behind it. I went for follow ups every few months and it all looked good. Then in January this year it started to hurt, the tooth was almost out (loose like a baby tooth) and the gum opened to expose the bone on the side.

The oral surgeon thinks it was the Zometa which stays in your body up to 11 years. He says that Xgeva has a 1/2 life of about 3 months and is much easier to manage. I switched because of the side effects of Xgeva, but Zometa was much worse.

Lisa

[Wolverine19 in reply to LisaT23]

Hi Lisa I had been on zometa about 9 months and had to have a tooth pulled. The oral surgeon was a bit skeptical but I had to sign a bunch of documents promising not to sue. I think maybe the tooth was ready to come out, if I remember right he did not anesthetize me and he just pulled it right

out I didn't even feel it. I had no issues or problems but maybe I was lucky. Yes, ladies, definitely take care of your teeth so you don't have to go through any of that later.

[JanaLynn]

You are not alone Lisa. I was diagnosed with bone Mets in October of 2016 at which point my oncologist instructed me to go to the dentist immediately to make sure I wasn't going to need any significant dental work because I couldn't have it done while on Zometa.In April of 2018, I had a root canal fail. They took me off of the Zometa and pulled the tooth the end of July. I then had to wait four months before they would start the implant process to make sure the space was healed. They finally put the post in on December 7th and told me I had to wait four more months before doing the stress test and measuring for the implant tooth...that appointment has now been scheduled for April 8th. One full year since it originally failed! They did allow me to take a Zometa injection in February, but I will have to wait until June before I can get another. Clearly, that jaw thing is very common. For sure, I will be taking extra good care of my teeth! Good luck!

[LisaT23 in reply to JanaLynn]

Hi JanaLynn,

It seems this is more common than they say.

Lisa

[JanaLynn in reply to LisaT23]

For sure!

[PJBinMI]

I'm so sorry that you are going thru this! It sounds miserable.

I was diagnosed with mbc and bone mets before the osteonecrosis of the jaw side effect was known. Less than a year before. When it became known, my onc did tell me to have regular dental exams and to tell my onc about being on Zometa. She also told me that it was less common in those who take care of their teeth and have regular dental care, which I have always had. I don't know if that is still true. But I have known several women who have gotten ONJ and their dental care after that has really varied. If I got OJN, I would call the dental school in my state, at the same university medical center where I get second opinions on breast cancer treatment. One of the women I know saw a dental surgeon there as she kept getting infections in her mouth. After it cleared up, he recommended that she brush her teeth only with Arm and Hammer Peroxicare tooth paste and use original Listerine mouth wash. So, since she told me that, I have superstitiously used both of those. I was on Zometa, at half dose as I'm allergic to it, for several years and then Xgeva when it became FDA approved. I have "extensive" bone mets. After back surgery unrelated to bone mets, the neurosurgeon told me and my onc that my bones were "hard/brittle on the outside and soft on the inside" and I had a several years break from bone meds and just went back on the Xgeva about 8 or 9 months ago.

For those who have a strong reaction to these meds, ask if you can get a half dose to see if that makes it easier to receive. Also be well hydrated--extra water day before, day of and day after. You could also try taking one Benedryl shortly before, like an hour perhaps.

Good luck to everybody! It's sooo darn unfair to have to deal with these issues when we already have this blasted cancer!

[theresac1]

Lisa, I am so sorry to hear this. I was so concerned about going on Zometa because of the issues you just described. It took me a year to get through all of my dental issues before going on Zometa. I pray for you and that your issues with your oral surgery and dental work will not be too difficult for you. .

[NCDS]

Just starting this path! Need root canal, now need to see an oral surgeon because of the zometa! Never ends! Thanks for sharing, gives me hope!!! Prayers!

[LisaT23]

Hi,

I did 2 months of zometa then switched to xgeva due to side effects of the zometa. I took xgeva for about a year and a half then had a small piece of exposed jaw bone. Oral surgeon said ONJ, onc said no more xgeva or any drug in it's class. Oral surgeon removed a large piece of upper jaw bone 4/23/19 (1.1 x 2.6 x3.3 cm). So far it is healing and did not affect my sinus thank god. I still have a hole in my gum a 5 weeks later that is healing . Oral surgeon says it will take time, and I will see him in mid June for a follow up.

Luckily the only tooth this cost me was my back upper molar, my wisdom teeth were removed when I was 16. the piece of upper jaw bone removed was big (1.1 x 2.6 x3.3 cm) but it was where the back molar, wisdom, and behind that. We were worried the sinus might open into mouth and be a big problem, with food and drink able to go in. But after the DR came out of surgery he said he didn't even see the sinus!! Now he says the hole is a "blind hole" not opening anywhere else, and will take time to heal. I have to rinse every time I eat, and he gave me a syringe to squirt water gently, but it seems to be getting smaller.

I am not sure if the bone will grow back, but as long as the gum fills in it will be fine. You can't tell by looking at me, it did not affect my cheek bone. If I press on my cheeks it feels a little more hollow?? He said that I would never be able to do an implant, but could wear a partial denture once it heals.

The tooth extraction was covered by dental and the jaw debridement was covered by my medical insurance.

Lisa

[Dragonfly2]

I’m on Zometa and your story is a graphic reminder of the dangers of these drugs. I had to have a crown after I started the Zometa...but my oncologist took me off it fir several weeks before and after to make sure that there was no impact. I hope you are feeling well now...it’s terrifying to see how these lifesaving drugs can have a dark side.

[LisaT23 in reply to Dragonfly2]

Hi,I am all good now gum still has a “dent” in it, but is not a opening to anything. Oral surgeon cleared me to restart xgeva on 1/15/2020. I found that the bone pain from Mets got pretty bad without the xgeva. Pain meds didn’t really help but had me bumping into walls and things. With the xgeva every 6-9 weeks (depending on calcium levels) pain is very slight and does not last a minute at a time. Ihave not even taken Motrin for pain . So much better.

Surgeon says as long as bone does not get exposed again (from dental work like an extraction) ONJ should not be an issue again.

Lisa

[EvaL]

Well I had no idea that Xgeva would cause any side effects, I had an extra bone growing across the roof of my mouth and a hole in my jaw that I had surgery for last week to remove. This drug has scared me so bad.