Last night I had a really sore jaw. I have woken up today, Sunday, with it. I would say it’s even more saw today. Right side, underneath at the back. It could well be my glands. So I’m not freaking out, just asking you all a question.
I have been reading up, (as I always like to do when I’m at all worried, as I feel it is better to know than not to know), about the problems that Xgeva/Denosumab can cause with bones and in particular, jaw bones. Do any of you have knowledge or a scientific/medical interest in this issue?
I am posting one of the many links I have read about it. But I don’t want to go rushing to the hospital or ringing my doctor yet. I guess I would probably go and see my GP before that. But thought I’d ask if any of you have come across this issue at all.
PLEASE.....Don’t read this article if you are at all worried for yourself.
I have tmj and has gotten worse on xgeva. It’s on my right side my jaw will crack out loud when chewing and is always sensitive and at times wakes me up last night it went straight up to my ear with pain
I think it may be glandular.... but can’t tell cause of pain radiating up towards jaw and down the neck also. Anyhow. I’ve an appointment at my local doc for tomorrow and also have rung the onc nurse at my hospital to see if she thinks I should go there too.
But all that info is great for all of us to know should anything like this happen to any of us.
Cheers from down under!
Chris.
Timtam56
Hi Timtam! I have medical interest in the topic, but no personal experience....so I'm hoping that some folks with experience reply! :).
Over the years, I've periodically had pain/weird "experience" (like tightness) in my jaw, but I've attributed it to stress. I once consulted my dentist about it (maybe Barbteeth will weigh in!? ) and was fitted with like a plastic cover for my teeth to prevent like grinding teeth. I subsequently found similar at a drugstore for a few bucks, which worked fine for me.
Oddly, maybe?, I've not had the issue since being diagnosed metastatic...mabye because I stopped working and I'm truly less stressed by this freakin' disease than I was by my corporate jobs!!
In any event, I'll state the obvious...consult your onc or your dentist...but my based-on-nothing guess is that it's likely stress-related as opposed to that awful necrosis/jaw thing that can happen...
I woke up one morning with the side of my face swollen, it freaked my nurse practitioner out so she sent me to an ENT. It turned out to be a blocked salivary gland (treated with heat, massaging it, and sucking lemon drops). I was thankful it was only that because we were all afraid of some kind of jaw necrosis! The ENT called it garden variety in sort of a snotty way, but I told him I was thankful to just have a garden variety problem! Hopefully yours will be nothing frightful!
I’m not an expert on ONJ at all...however if you have swollen glands then the most likely explanation is an infection...however you need to be checked over
When I was in practice a lot of my patients who were taking bisphosphates never had jaw necrosis....it is extremely rare but can happen
I have had ONJ for 18 months. It started with pain in my jaw and the dead bone started surfacing on both sides of my lower jaw. I keep antibiotics on hand if I get an infection (which is very painful) and rinse my mouth out regularly with mouthwash. I visit an oral surgeon every six months to monitor the situation. I could have surgery to remove the bone, but don’t want to. It falls out eventually. I’m not in severe pain. I did stop Zometa but it stays in your system a long time and I’ve not had progression of bone mets in a year since I stopped. If you have it, it’s treatable.
Hi, I am the same. I had Necrosis develop last July after having a tooth extraction and a Denosumab jab a week later. I had to have a small procedure on my gum to have 5very small pieces of upper jaw bone removed. I was told the scrap the bone to make it bleed and get rid of the Necrosis but them surgeon didn’t do this. He said leave well alone. The socket still hasn’t healed after 7 months and I still have discomfort but all you can do is adhere to strict gentle hygiene. I started back on my jabs this week. I wanted to let the healing take its course and it was my decision to come off of them to give my jaw best chance. I go to my dentist every two weeks and was under the care of a Facial/Cranial Consultant. My Oncologist knew very little about aftercare and left it to them. SO NEVER ignore the pain ladies. We have to look after our very special lives. Best wishes
I have only have three of those injections thus far. But my onco was very adamant that if I needed any type of dental work, she would postpone my starting the injections. It is one of the side effects (jaw, teeth pain) and she told me once I started taking it, I could not get any invasive dental work done bc of these side effects. She wanted to go if I wanted to go to a dentist before I started but I had nothing wrong and had been already so I said no.
I remember reading another poster's experience saying she had decided to have extensive work down (I think new implants throughout her mouth which took over a year.) Once they were all completed and done, she then started on the injections. After a few months, she started having severe jaw pain so her onco took her off.
So I would tell your onco first since this does seem to be a side effect of this medication. Sorry to hear you are having issues with it. So far I have not but like I mentioned, I only had it three times thus far.
Thank you aamkearns. I am feeling it’s more a gland thing last night and this morning. But can’t get into my local doc till tomorrow. So I’ll keep you all posted. Thanks for your generous responses alllllll!
I actually had treatment related ONJ, very hard to treat other than antibiotics which when it happened i started on augmentin immediately and went in to see my oral surgeon. I never had drainage through my jaw but only because I started on antibiotics when it started.
That’s great to know. Thank you. Sorry for any of you who have had to deal with this stuff. It would not be nice on top of what we already have going on.
I was on xgeva and started having some jaw pain. They told me it was probably just me being tense. I have four implants in my lower jaw. On one side my gum started receding and my pain got worse. When one whole post was as almost visible, the Oncologist said no more Xgeva. I haven't had it in over a year and my jaws have gotten a bit worse. I had to have surgery on my nose and they put a lot of pressure on my jaws. For 3 days after surgery it was tough. They blocked up on me a couple times and that really freaked me out. I am doing ok but it's still a pain.
Selma. That sounds awful. “Awful” seems a very pathetic word for what you’ve gone through. But thank you so much for sharing this, as these things are incredibly important for all of us here to know about. As it was for this reason, having more know,edge, and not feeling alone, that I was lead to this site.
Please keep me informed as to how you are. It really does sound rough. If you ever need to vent about pain or whatever, don’t hesitate to message. I hope you have support of family and/or friends in all this.
Timtam56, thank you for your kind words. My husband is my support. My 88 year old Mother and my 67 year old sister are my prayer warriors, along with some friends. I don't complain about it too much. Nobody wants to hear all our problems. I have friends say, you look great , you'll be fine. They just don't have a clue. 12 surgeries in 2013 and 2014. Thought I was doing ok. 2017, spread to ribs, shoulders, spine and front of hips. I think my body is starting to wear down from the fight. I've had no progression for 2 and 1 half years . Thank God. I pray for all of us. The thoughts than run through our heads as families and friends plan vacations 1 to 2 years in advance. We're human, it hurts. I think there should be a cure by now. Just my opinion. That's the most I've ever written on here. I must be having a bad day. I'm being a bit negative.
It’s fine to be negative you know. I’m surprised at how positive we stay on this site and in life. I think we all use need to be allowed to heave our down times. Our up time’s are what keeps us looking so good I reckon.
I know that I have to stay positive, cause I’m still alive. But I certainly still have some moments when I feel very lost and alone in all this. Even with my friends and family around me.
I wanted to share with you my experience with Xgeva. I have Stage 4 Breast Cancer since 2017. I took the Xgeva injections for a year before I got the dead jaw bone in the back of my lower jar. My gum actually split open and the bone was very much exposed. I reported it to my ONC and she took me off the shots and told me to take vitamin D instead. She also sent me to a Oral surgeon that grinded it down little by little over 6 months and finally the last part fell out. I did not experience much pain mostly just tenderness and swollen glands in my neck.
This cancer journey gives me new challenges every day. But I look at it this way. If I have aches and pains for sure I'm Alive!!!
I pray 🙏 that we all will be cured and have the strength to get through the journey.
Welcome ! I am sorry you had a bad experience with Xgeva and hope it is now healed . My onc has 3 patients (out of 100) that have had it too, so maybe it is more common than we think, so Timtam is right getting herself fully checked out . Take care and I hope all is going well with the rest of your treatment . x
I had problems with zometa & xgeva so I stopped all injections, I recently had to see my radiation oncologist she it was fine that didn't do the injections. Hate to say it but I really think those study bones know more than those study the blood work. Both are oncologist so I feel fine not having the injections.
Thanks for the replies. Some things work for some people and some don't. What's sad is it all starts out as trial and error for l if us until they find out what works for us. I just wish they would let us know something about the side effects to begin with. Had I known earlier it would not have gotten so bad. I thought it was from a bad root canal..duh
I would have stopped the Xgeva earlier. I'm doing fine without it now. I've been off for a year. My Oncologist said I probably got enough of it to stop taking any bone strengthen except for vitamin s. I push in lots of Proteins from Eggs and Ensure and Protein Bars etc. I also eat ice cream and smoothie 😋 for calcium. My bones are now trying to heal themselves so I guess I'm doing something right! Lol
I'm not against the Xgeva but I really feel sometimes we get over medicated perhaps for too long on some meds.
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) and was fitted with like a plastic cover for my teeth to prevent like grinding teeth. I subsequently found similar at a drugstore for a few bucks, which worked fine for me. 
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