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.
1/15/2015, IDC, Right, 2cm, Stage IIIA, Grade 3, 4/6 nodes, ER+/PR+, HER2-
3/6/2015 Lumpectomy; Lymph node removal: Sentinel
4/7/2015 AC + T (Taxol)
9/27/2019, IDC, Left, 1cm, Stage IV, metastasized to bone
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