So after 4.5 years of monthly Xgeva. It looks like I have early stage ONJ. It showed up in the form of an ulcer like thing in the roof of my mouth that didn’t go away. It hurts and radiates out to my head, jaw and ear. I am cranky. Like stay the heck out of my way cranky.
So. Those with experience with this fun little side effect party trick, let me know how you handled it.
I am being referred to UCSF or Stanford. So if anyone has experience with either for dental stuff let me know.
Xo
A very pissed off P
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Pbsoup
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Sorry that your experiencing this.I don't have any first hand advice but if you scroll down to the related post section there's lots of post relating to ONJ.
I've been on Zometa IV for almost 3yrs but my dose was reduced 2yrs in to being 3 monthly when it was every month before.
Hope you get all the care and assistance you need to get through this asap.
Hi Pbsoup, I figured I would post this again here for you or anyone else it may benefit. It is from a post I made a few years ago:
(a little background on me- I am a dentist with a mom who was diagnosed with MBC 3 years ago)
I can’t diagnose or definitively recommend any treatments online- I feel the need to make that disclaimer but I’m happy to give my input. I have had a lot of experience with ONJ, as I have worked closely with cancer treatment facilities. Ask your dentist/oral surgeon about tocopherol (vitamin E) and pentoxifylline (vasodilator) regimen. I had about half my patients with ONJ have resolution, most others having noticeable improvement in presentation and symptoms. Some, it did not help at all but I found that those patients had either history of smoking or other major dental considerations (smoking decreases blood supply to the jaw and decreases healing in things like ONJ). These two drugs have little to no known side effects for most people, and every patient I had them on tolerated them very well.
I thought this was a relatively known attempted treatment for ONJ, but haven’t seen it listed on here yet so I figured I would mention it.
Here is a link to the short version of a recent study:
sciencedirect.com/science/a...
The regimen is usually 1000 mg vitamin E (tocopherol) - once a day, and 400 mg pentoxifylline twice a day.
Thank you - that’s really helpful to know and will keep it for future reference. Been on monthly xgeva for 2.5 yrs and was only changed to 6 weekly/3 monthly at my insistence. I had a bone infection before getting cancer and with a mouthful of 30 yr old crowns am terrified about problems further down the line. My dentist says I (now) have excellent hygiene and use high strength fluoride toothpaste. Might I ask if you’re willing to share where you practice?
Sure- I’m in upstate NY. The high strength fluoride toothpaste is a great preventative measure. Prevident and Clinpro or anything comparable can be a huge help. Which brings me to another thought about prevention- some dentists prescribe chlorhexidine mouth rinse. This can be a very effective measure for bacteria control and has wonderful properties. However, it actually can delay wound healing in people with ONJ depending on the stage and location. Warm (gentle) salt water rinses are usually more effective.
Thank you for the warning re chlorhexidine. I guess it’s just too strong. I’ve always been an advocate of salt water. I’m in uk but will alert my dentist to your suggestions and the journal paper if ever needed.
Thanks so much for the info. I have mentioned my concerns about ONJ to my Dr and she brushes it off as she believes it is so rare it is not worth worrying about. I was able to move to every 3 months only at my insistence. I appreciate having this info just in case.
That’s great that you have advocated for yourself. Your Dr is right, it is rare. It’s not something many dentists see in their careers. The risk is much lower if there is no need for dental extractions or manipulation of the bone. However, in my experience, sometimes there is no rhyme or reason to who gets it and who doesn’t- which is why being proactive and informed is so important. Closer follow ups can never hurt.
Thank you so much for sharing your experience with ONJ. I have been on Xgeva approx. three and a half years and facing an extraction with many complications. My last injection was on January 4th. As a preventative treatment I was prescribed the pentoxifylline tocopherol regimen. Unfortunately the side effects were so severe I had to stop after two days. They included a feeling of suffocation, bad insomnia and that was on 400mg twice daily. My dental team are now suggesting red light therapy to assist in healing. Have you had any experience with this treatment? I am currently on my second course of antibiotics while I bounce around the Dental community and have a consult with the oral surgeon on Monday. Any input you can give would be greatly appreciated.
It is so hard when going between oncologists and other specialists and they don't know each other's fields. After my oral surgery, the periodontist suggested I take turmeric to promote healing. But it turns out that was not good for my cancer. I bounced back and forth, taking it not taking it, depending on whom I was listening to.
As for red light therapy, I really wanted that because it is supposed to help with the joint/bone/ligament pain I was having on anastrozole, possibly from lack of synobial fluid. Red light therapy is being studied as cancer treatment, but they are no further along than mouse studies, with skin cancer. It would be different dose and intensity.
There was some thought that in stimulating collagen and synovial fluid, which the anastrazole was reducing, it would also stimulate cancer cells. That is, anastrozole starved the cancer and coincidentally reduced synovial fluid, so anything that increased collagen and synovial fluid might also stimulate the cancer cells. (This is such a medically crude explanation, a medical professional looking at it would probably cringe; on the other hand, I did most of this research myself because the docs were not much help.) So, in the end, my oncologist said it wasn't worth the risk.
If the red light therapy is just in your mouth, and you don't have cancer there, maybe it is safe. The good thing about red light therapy is that it is local, not systemic. The odd thing is that the meds that protect us from bone loss and even fight bone cancer are so hard on the bones in our mouths. The reason, one dentist told me, is that Xgeva and bisphosphonates reduce blood flow to the mouth. Hence the medications you were on. Aren't there other things they can give to stimulate blood flow? Like...aspirin?
The whole process for me so far seems like a bit of a crap shoot. So I met with a dental oncologist who recommended the red light therapy, as well as eight weekly injections of a drug called teriparatide and the pentoxifylline. However, my regular oncologist said no to the teriparatide. So the latter two are out of the question. I did buy a red light device that looks like a flash light that I use twice daily inside and outside my mouth. The notes in my file say that I will also be having in office red light treatment after the surgery. Not sure how that works if it is a daily treatment or what. I am anxious to discuss this with the oral Surgeon on Monday. Praying all will go well in the coming days.
Envious you were able to see a dental oncologist and to use red light therapy. I think it is promising, just the risks are not yet known. Tell us how that goes.
Strange that red light therapy can be used in so many ways, and none of my docs (dental or oncology) knew about it.
I am so sorry you’ve been having this experience, and I know I’m a few weeks behind catching up with my emails- the notifications of these replies went to my junk mail which is frustrating. I hope your appointment with the oral surgeon was productive and promising. I do not have any personal experience with red light therapy but I have been following it for a while. There was an article last year that I found especially interesting and was written by a periodontist.
The article is well written and has many excellent points for light therapy specifically in the mouth. I can’t speak to other areas of the body because that’s out of my specialty but I would imagine it’s not indicated elsewhere. Light therapy in areas with cancer could stimulate cancer cells.
As far as the pentoxifylline and tocopherol regimen, you are the first person I’ve known of to have such side effects. I’ve read that less than 1% of people experience that, and I’m so sorry you were one of them. That’s usually how my mom is with medications, if there’s an unlikely effect, it will happen to her.
Tammy was right about the other things that help with ONJ and blood flow- like turmeric. (Tammy, if you’re reading this I really liked your explanation of everything in your last few posts and I appreciate your feedback you’ve given to so many!)Turmeric is contraindicated because of the stimulation of cancer cells. Aspirin also helps with blood flow but it’s a different mechanism of action- it doesn’t benefit the blood flow in the same way in the mouth. Many people with cancer on chemo medications need to stay away from aspirin due to kidney and liver function.
I hope you were able to possibly have a debridement done, maybe some local antibiotic placement, and that the oral surgeon was able to figure out a plan for you.
Thank you so much for your reply and the link which concurred with what I had been told about red light therapy.
After two opinions by endodontists, it became clear that due to significant bone loss (which was probably the result of a root fracture) that the prognosis for the tooth was not good. The oral surgeon agreed and an extraction took place ten days ago. So far so good and I will continue to be monitored in the coming weeks.
Come to find out after a complete mouth scan I have two other teeth that also need some work. So the next one will be a re do of a root canal that is also infected, however, so far asymptomatic. This is all quite a shock to me as my dental hygiene/gums were in good condition.
hi there Pbsoup - im so sorry that you’ve got this known complication. Yet one more painful thing to have to deal with in your metastatic journey - real bummer. Its a big fear of mine too. I hope you get some response to the posted suggestion(s) - let us know how you get on.
I'm so sorry you have developed this ONJ! I'm a long timer and developed ONJ after about 18 years of treatment. It was found early by my local dentist, who referred me to an oral surgeon who was able to treat it. He removed dead bone bits. It hasn't spread and I'm just back to seeing my local dentist twice a year. I don't know how common it is to get it managed so well. It's important that we get good dental care when on these bone mets meds and report pain or changes in our jaws. I hope you'll do as well as I have,
Hi PJ sorry Hzvent been on site. But I was reading ONJ n I need a molar pulled but haven’t found a dentist in NJ yet. I still go to my dentist in PA (20 years) n have my cleanings. Some of the gum is receding over a few teeth but he said all is good it’s just age. But I need the molar pulled. N he was waiting to hear from my oncology dr n was gonn get back to me n hasn’t. Now reading these stories I am really scared to have it pulled. Other then having severe fatigue n the Regular old age symptoms from my arthritis and all is good with intestinal issues I really can’t complain tolerating my meds n they are working cause my cancer is stable. No signs of metastasis. Saw all my drs. Cardiologist… kidney… urologist cause I Hzve stones in both my kidneys. N they saw a cysts on. Recent MRI but it’s a cyst . Thank the Lord. Just have to see a Rheumatologist for my arthritis.
Tomorrow I will have blood drawn n see NP at oncologist office to see if all is good to start my Ibrance.
I had it. Of course, it no longer seems rare to me. This probably is not helpful, but I will give the blow-by-blow of my ONJ.
I was on Xgeva for 3 years when my regular dentist just pulled a tooth. I told him you can't do that with Xgeva. He said he knew all about it. Turns out he shouldn't have done it according to the oncologists, but he was right and I had no problems with it. It probably delayed the ONJ for a while. I had two implants and there were always spaces between them and the next teeth that were hard to keep clean. I started trying to refuse the Xgeva, which I was having every three months, in the summer. Onc went ahead. I finally put my foot down and said no more. I had to push hard. In October, she finally said, "You don't need it anymore." My bone mets had been resolved for over a year.
I was sent to a dentist at the hospital who worked with cancer patients. She was great, and the fellow working with her was even better. She gave me that antibiotic mouthwash, but told me to dab it around the troubled implants because it turns your teeth yellow if you swoosh it around. A bit of unnecessary vanity. She told me to have frequent cleanings and to come back to her in three months. I was afraid to go to an outside dentist, who wouldn't know about ONJ. I kept trying to make an appointment with her as things went downhill. I never could. Either I didn't reach anyone or I did and would not get a callback. I complained to one of my docs, who said just go to the office. I tried to do that but was not allowed upstairs without an appointment. So dumb of me not to go elsewhere.
I then tried to get an appointment with the dental program at the same hospital. (The woman I saw was in the oral surgery department.) I got an appointment for months out. I knew an infection was brewing. I finally got a swollen jaw, raging infection and called the emergency on-call dentist, who turned out to be a periodontist, on a Friday evening. He prescribed antibiotics and made an appointment for Monday morning. So I got in a bit earlier than the appointment I had. He sent me to an endodontist for two root canals on the teeth next to the implant that was in the worst shape. He agreed that I should get a water pic. That was a disaster. The force of the water was so much stronger than I expected. It shot all over the bathroom and sent the bacteria up into the growing space around the implant. The endo tried to do root canals but couldn't. The teeth were too far gone. Back to the perio and new x-rays which basically showed that the piece of my jaw to which my teeth were attached had separated from the rest of my jaw.
He ended up doing surgery. He cut out the jaw bone on the upper right side of my mouth, which took three molars. That part of the jaw bone also the bottom of a sinus. (I am sure I am describing this badly or incorrectly.) Sent to ENT, who said the perio had done a good job of sewing a flap of tissue to the bottom of the sinus so he didn't need to do anything. Back to the perio for more surgery on the implant on the left side. This time, with my begging, he took out only the implant and jaw bone above it; I begged him to leave my incisor because it would show. He was wary because there was nothing to support the adjacent teeth. So there I am. I use the prescription tooth paste. It seems to be stable, but my front teeth have too much wiggle. I got a partial denture. It is a complicated affair that has three teeth for the right back molars that are gone, and then swoops around and has one tooth on the left toward the front. It clamps on to the adjacent teeth with metal spikes and loops.
I went back recently and saw the perio and two dentists because after I wore it (not often), the tooth the denture clung to would ache. I was told to wear it as little as possible, and that this was the best they could do because of the risk of further ONJ, and because I have a tonsure. I was really kicking myself because, before I got the implant on the left one toward the front, I had had a "flipper," just one tooth that clamped in. It was great. Shortly before all this happened, I found it and threw it out. I had an implant: I would ever need it again. I never throw anything out, but into the trash it went. I could use it now instead of the denture that hurts the tooth next to the missing molars on the upper right.
In the interim, I saw a different oncologist than my regular one. It is she who sent me to the ENT. I realized if I had had her all along, I might have avoided this. I could talk to her, easily. She would have gotten me to a periodontist much sooner. My oncologist stays in her lane and is inflexible and our communication is pretty bad. Soo -- many mistakes along the way.
No one knows, really, how long Xgeva stays in your body and potentially causes ONJ. Based on my experience, I would say about 8-9 months. More than 6. It is clearly gone now.
The sad part about this -- in addition to needing a denture, something I always hoped to avoid, and never would have needed without the Xgeva side effect -- is that Xgeva worked very well for me. Cleaned up my many bone mets lickety-split. (Who says that anymore? I don't know where that came from.) Now I have a bone met again that is growing, and I cannot go back on Xgeva. If only....if only I had stopped it, prevailed on my onc sooner, or if she had told me I didn't need it after a year or two, I could take a break -- I could have avoided this and could go back on Xgeva now.
So that is my advice. Stop the denosumab or whatever you are taking for bones as soon as you can do so. No more than 2-3 years. If you need dental work (apparently not extractions! -- in my case, it was the implants that caused trouble), go off it way in advance.
I wish I had had the advice of the dentist who wrote in -- but I did have the mouth wash (yet she says that might have slowed healing) and, after the fact, the prescription toothpaste. Other people on this board have had worse ONJ (one person sent a photo that looked like a tooth coming down from her hard palate), and so have other patients at the oncology practice I go to (according to the young and chatty oncologist I saw when my uncommunicative onc was away).
Yikes! What a saga. My local dentist and oral surgeon were pretty inexperienced so I will be calling in the big guns at Stanford. Although my oncologist warned the recommended treatments can vary from expert to expert.
All of these stories are why I have chosen to not take these drugs. Currently my bone Mets are stable and I have no pain. My oncologist doesn't like that I have chosen not to take these drugs but she does admit that she has other patients who have also declined. It doesn't mean that I might not change my mind if my health changes, but I don't like how they try to push bisphosphonates on every patient. The side effects will continue as more of us live longer.
But you poor thing! I’d be cranky too. I have been and still am on monthly XGA injections also. 5.5 years for me now. It is such a worry for me. And a few months ago, I had to have a tooth removed so I was really really scared. The hole still hasn’t cleared up, but it is repairing day by day. I can imagine, (well maybe I can’t), but I really really feel for you.
Me? Or someone else who shared their experiences here? If me I’m doing fine. The ONJ has not resolved so I am going back to Stanford to see what options there are. It’s a slog but I’m alive and otherwise living a decent life.
Yes, it is YOU I wanted to know how you were doing. You and LITTLE MARY exchanged posts several years ago about how MBC is like a Bus following one down the road. I still treasure that analogy and have shared it with my Doctors, all of whom have written down what you both wrote. I am so sorry you have ONJ about which I knew nothing. Thank you for taking the time to respond. I have entered my fift6h year with MBC...a few hick-ups along the way but I can still ride my horse. As with all of us, the loss of energy is my primary complaint. My husband and I have appreciated how you have written about MBC, so very insightful and wise. Please know that you do not need to reply to this but I am relieved that you are there. (I seldom go to this site and realize I should visit it a bit more. ) Do take care.
Ha! I too am going into my 5th year and still ride my horse (badly, but keep at it) I am not sure how insightful and wise I am. Mostly I bumble around in a state of sublimation and denial.
I hope your hiccups haven't been too onerous. This mouth thing--sores from Afinitor + ONJ is really a bore. I am hoping to get to the bottom of it soon.
And I have been on and off this site recently. I sometimes just want to not think about cancer for a moment or too... xxP
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Dentist Thursday to check ONJ I have.
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