Osteonecrosis of the Jaw (MRONJ) caused by Zometta

flyingkites

Hello, I am wanting to tell others about my experience with Osteonecrosis of the Jaw caused by Zometta treatments for bone metastasis. The reason I am writing is because it was hard for me to find information when I was dealing with it.. I am the kind of person who Googles my condition, medications, treatments, etc. like crazy. Often times I am the one telling the doctor what I want to do for treatments. I have found that nobody cares about my health as much as I do and the way to get the best treatment is to be your own informed advocate. Maybe this information will be helpful to someone out there.

I was diagnosed with MB to the left hip in Sept. 2019. I began taking Ibrance/Letrozole and having Zometta infusions every 3 months. The Ibrance caused many painful mouth sores, but one time I got one that that was different from the others. It hurt quite a bit at first...like a typical canker sore, but it didn't heal like one. A couple weeks later, it was still there and hurting. Then one day my lower jaw started hurting quite a bit. Because I had been on Zometta, I knew the risk of ONJ and was concerned that this is what I was dealing with. I was out of town, but felt I needed to address the pain right away.

I will keep it short by telling you this... I called a (1) dentist as an emergency, who told me I needed to talk to an (2) Oral Surgeon. The oral surgeon told me to call an (3) Endodontist. The Endodontist told me I needed to call a Dentist. So I started again. I talked to anther (4) Dentist, who told me to visit an (5) Oral Surgeon, who after xraying and finding nothing wrong with my tooth told me to definitely NOT allow anyone to pull the tooth. He then sent me to an (6) Endodontist who xrayed, and CT scanned the tooth and finding nothing told me I should get a root canal and that had an 80% chance of taking care of my pain. I scheduled the root canal, but then thought better of it. I came home from my trip and called my(7) Oncologist who told me to see an (8) Ear Nose and Throat Doctor. The ENT told me ONJ is rare and it was not likely that. I asked him to assume I was right and tell me what he would do. He told me he would prescribe antibiotics and Chlorhexidine Solution rinse. So I asked him to do that and he did. A couple months later the sore was still there, getting a little bigger (about the size of a pencil eraser) and I could see and feel the bone beneath it. So I went to my (9) local dentist who referred me to an (10) Oral Surgeon. The OS told me that the bone needed to be surgically removed ($2000), the bone ground and that would leave an opening in my gum for the rest of my life and I would need to take antibiotics to prevent it. I scheduled the surgery but thought better of it later and canceled. About 1 month later the piece of bone worked its way out of the hole (kind like a loose tooth). The hole healed and never bothered me again. I got another sore a few months later, waited it out and it eventually sloughed off the small bone piece and healed.

That is my experience. I cost me a lot of time and money to gain it. It is my experience that many in the medical field have no clue how to treat ONJ. I have heard of people getting teeth pulled and Root Canals at the Dr's suggestion to no avail. Of course that would be the case, because the problem is in the bone, not the tooth. For me, once the bone was exposed, it stopped hurting it just was a weird exposed bone. Both are now healed and they don't hurt at all. I am not a professional, but my suggestion based on experience is to just wait. Get some "Magic Mouthwash" (prescription) for the pain, check in occasionally with a professional to be sure it is not getting really bad and just let it run its course.

Anonymous

Wow, you really went through the wringer on this but came out okay on the other side, thankfully. Great example of advocating for yourself that we can all learn from!

Thank you for sharing your experience. I really think every medium to large size cancer center should have an oncological dentist either on - staff or at least, in the office Rolodex so we can be referred when needed.

KBL

Thank you for sharing your experience. I am also on Zometa every three months. I will definitely keep a close eye on it.

FGodmother

I am getting Zometa in monthly infusions. Your story worries me. I only have one bone met and osteopenia. I am on Ibrance and Letrozole, also. Is monthly too much Zometa?

KBL

FGodmother, I did monthly for six months, then was allowed to switch to every three months after that. Maybe you could ask. I have extensive mets through bone and bone marrow. I haven’t had any fractures, though. Not sure if that’s why.

star2017

Thank you for sharing, flyingkites. I hope you don't have to deal with further complications. I am very nervous about starting Zometa.

amontro

Flying - If you all can manage all of my previous posts regarding Zometa ans osteo necrosis, you will see we'ver been through almost identical challenges. I was passed around from dentist to doctor to oral surgeon to infectious disease specialist!

I started 10 years ago with an infection on the roof of my mouth. I had no idea that the Zometa would do this when I began 13 years ago. The inflamation turned into an ulcer with bone exposed. Moving on to 2-3 years ago, my rear left jaw caused me agonizing pain almost on a daily basis. The ID specialist had me on Augmentin to prevent further pain. Being an ID she did not know what to do. My dentist was good at explaining what was taking place scientifically, and every dental surgeon would not touch me.

Zometa causes osteo necrosis and we are informed that no dental work should be done. One of the dental surgeons had a patient with ON and her jaw fell apart during a procedure.

Since last year been under the care of dental surgeons affiliated with a major hospital in a nearby city. I had my wisdom tooth removed and the pain had continued. I tried all that oral stuff that was crap. I have learned to put lidocaine on a cotton square fol it over my gum and under my tongue until the pain goes away. Did I mention that my tongue also swelled greatly.

Anyway if you want to read more details of what I went through, check out my previous posts where nobody paid attention. Thank you for bringing this to light again!

amontro

I want to explain more of my previous post regarding the same run around that Flyingkites had. Zometa builds its own protection around our bones, like a fort. When my jaw started hurting a few years ago, and got inflamed, It was because the bones began protruding in my mouth. After stopping Zometa more than a year ago, the "extra" bone material started protruding up from under my rear gums. I was told eventually that the bone build-up from Zometa would work out of my system gradually.

I was told by previous dental surgeons that the bones would erupt by themselves and fall out and not all at once. A lot of my pain came from the small pieces of bones sticking out of my gums and rubbing against my tongue. This was a slow, painful, tedious process, and it is still going on. Right now, I don't have as much pain as in the past, but I deal with it preventively, as I mentioned before, with cotton gauze and lidocaine.

The roof of my mouth (since 10 years ago) still has a hole in it, exposing bone. It doesn't flare up too much because I'm careful. No more popcorn or hot (spicy). My current dental surgeons are still afraid to touch it unless it becomes more of a problem.

And, oh, yes, most of the bone structure in my mouth has changed, on its own. A few years back, the roof of my mouth was separated and hanging. I could put my fingers behind it if I had to. Also, twice I've had a piece of bone break through the roof of my mouth. First on the left roof and later on the right roof.

Because of some symptoms that I'm going through now, I am having a brain MRI tomorrow in case my bone structure shifted in my head. More fun to come!

amontro

I forgot to mention one of the symptoms I had during my many years experience with Zometa side effects and osteonecrosis.

About 3 to 4 years ago before the osteonecrosis in my jaw, and many years after the ulcer in the roof of my mouth, I discovered that the roof of my mouth detached and was hanging, so much that I could wrap my fingers around it if I could (I didn't).

I had this for longer than 6 months. At the time, my dentist who knew my challenges with dental surgeons, told me that the only thing he could do was keep an eye on it and measure it every time I came in. So, I had this detachment for at least 6 months to a year. Six months later I decided to check the roof of my mouth again and, lo and behold, the roof went up and attached itself! My dentist confirmed it and was amazed that it did so by itself. My recent brain scan showed my brain was clear. I can tell you for sure that the roof was detached over a 6 month month period and it was scary. This was the gateway to my brain, and any oral infection would have made it worse.

You've probably read my many postings on osteonecrosis in the past and I want to tell you that it is still not over for me. I had a new ulcer flare up 3 weeks ago that affected my jaw next to my molar and back came the pain. I was able to treat it with lidocaine on gauze (prescribed by my current dental surgeons). I am glad this worked and I will be seeing the DS for my routine exam next month. (I do not put my hands in my mouth, but when I do, I find a surprise. The tiny bones are still there.)

Again, I don't want to be an alarmist, but at the first sign of a sore in your mouth, beware.