Exactly how I feel! Max Fax could have discharged me with the option to go back if any problems arose and I’m so grateful they didn’t. I’m seen every 3 months, which falls between my 3 monthly Denusomab, so hopefully between them and my wonderful new dentist any issues will be picked up before they become a problem. Sounds like you’re in a similar position, but as you say🤞🏻it won’t be necessary! Kate x
I don't blame you moving dentists if he missed the problem.
Well I've changed calcium supplements so let's see what's Wednesday at my oncologist appointment see if they high enough xxx
Yes I’m under a max fax consultant and I have a lot of faith in him. My dentist is also on board now, although that took longer as my original dentist refused to believe I could have ONJ as I’d had no dental treatment and it happened ‘spontaneously’.
I haven’t asked where I’d have any dental work done but I’d prefer it to be done by max fax team. Hopefully it won’t be necessary 🤞.
Hi Daylightdancer, sorry to hear you couldn’t continue on Denusomab. You’re right you should, and I did go to the dentist before starting it but my dentist missed a problem under a crown I had. I’d been going to him for over 20 years, I’ve now changed my dentist! Kate x
Hi Janey, sorry to hear you’ve still got problems, when my jaw was healing, but it didn’t look that way to me, my Max Fax team would always be very happy that I wasn’t getting any infection in the area, more so than the bone being exposed. I did when it first started to break down but none when the work was done, and none after the first couple of months. I can understand your worry but from what I was told keeping the area of exposed bone clean and free of infection, which you’re obviously doing, is the most important thing. Are you under a Max Fax team? My dentist is very good but he agrees that any future dental work, other than more simple fillings, should be done by them. Kate x
I had a piece of bone that did that Kate but the main area of damage in my mouth is much more substantial. It’s an area of exposed bone of 1.5 to 2cms long that runs inside my bottom teeth. So hopefully you’re through the worst.
I’ve had this for over a year with no improvements. No pain now though but I’m really worried about any kind of dental problem and try to be so careful about dental hygiene.
Best wishes to anyone experiencing ONJ.
Hey girls in going to be slightly of tangent but I'm glad you are all sorted.
Ive always been told about denosumab go dentist pior starting treatment because of this risk, I unfortunately only had one dose because calcium too low. My dad is on another bisiohinates or however you spell it infusion for oesteroprois but fortunately for him he does not ot need infusion anymore for time being as bone strengthend lot but as he is consultant doctor bit in elderly care he looked up all about this condition I for when I start denosumab worried about this condition you ladies are all remarkable and glad you eventually got treatment for it and good luck who getting it xxx
You’ve done well Nicky!
While my Oncologist says I’ve had ONJ my Max Fax team don’t! They say it was heading that way but a slice of bone, which they believe had got infected when I had the dental work done, kind of splintered off from my jaw leaving the rest healthy. That piece of bone was being pushed out and the bone underneath healed over. After nursing for 40 years it never ceases to amaze me what the body can do! Kate x
Hi kate - don't I know it!
As it is I've actually now had 2 extractions whilst on bone strengtheners, the first has never caused any problems whereas this one is early days. I've also had very extensive root canal work (on the tooth that has just been extracted) again something that can trigger ONJ. I count myself lucky that I haven't had problems like you and some of the other ladies on this thread have had.
That’s good to hear Nicky. I’ve been told by my Max Fax team that any dental work I need in the future will be done by them at the hospital, and I’m so glad about that, think it’s definitely the way to go! I’ve been told my case was rare but my jaw broke down over 8 months later. The work I had done which caused my problems was done at a dental hospital by the Consultant Dentist, I had only been on Denusomab for 6 months, and had only had 5 doses. Just goes to show, you never know in this game! Kate x
I just wanted to add an update on potential ONJ as this seems the most recent and up to date thread about dental problems.
I have recently had a tooth extracted, at the max fax unit at our local hospital. I have been on bone strengtheners since my secondary dx in 2008 and currently been on Denosumab since 2013. I stopped Denosumab some 16 weeks beforehand and will be re starting it soon. This wasn't determined by anyone in particular, it just happened that way in terms of my treatment schedule. I was told that any ONJ usually shows up within the first 2 months of an extraction and having just had my follow up appointment today the max fax guy is very pleased with the healing of my gum. Fingers crossed I don't get subsequent problems but I wanted to post this to say that it is possible, if you really do have to have an extraction done (as I had to) to have it done and not necessarily encounter any problems. In fact I had less pain etc afterwards than my adult daughter did, who had to have a tooth extracted about 2 weeks before me, when she cracked it right down through to the root when she bit on something. I had antibiotics before the extraction itself and then for 5 days afterwards, in case that's of any help.
I’m sorry you’ve also got this horrible side effect. If it’s any consolation I’m no longer on the antibiotics and need no pain relief, but I remember the pain! Excruciating!
My maxillo facial consultant is keeping his eye on me - he’s almost fascinated to see what happens and how it develops.
I still have exposed bone inside my mouth but he believes the dead bone will eventually come loose and my mouth will heal - there is no sign of that more than a year after I was diagnosed with ONJ.
I hope you continue to improve, let me know how you get on.
I am exactly where you are at this time. My oral surgeon just couldn’t believe I had ONJ without having intravenous Prolia . I was in tremendous pain so he sent me to an infectious disease doctor. He gave me strong antibiotics and I am much better. I see him for a follow up on Monday. He has experience working with ONJ patients! I will find out what is next then.
Thank you for your kind words and apologies for the late reply, I thought I had replied already but it isn’t showing so maybe it got lost with the changes to the site!
I understand your reservations but hope everything is going well for you on Fulvestrant?
Very best of luck to you too, although I wouldn’t wish it on anyone, having someone who understands what you’re going through was a great help and support to me too.
Thank you and best of luck on the Denosumab. I’ve (reluctantly) agreed to go back on Fulvestrant, mainly at the behest of my husband who was beginning to get a bit frayed at the edges by the thought of me having no treatment at all. It means on-going UTI’s - so regular antibiotics - but at least my immune system has recovered enough to deal with them. I suppose I should say that it wasn’t that they wouldn’t refer me but rather the woman they did refer me to in the Head and Neck department was pretty useless which was why I elected to go privately.
Good luck with the future and thank you for your support - you’ve been a great help.
All my best to you
Hi PinziA and Janey4,
Really good to hear from both of you, and to read that you have both managed to find a good Max Fax team, absolutely essential in my opinion! You’re right to be surprised I’m back on Denosumab, and trust me, it wasn’t an easy decision but really I felt I had little choice for the time being as the Letrozole without it had really taken its toll on my upper spine. However it is being monitored and as the Max Fax team said I hadn’t actually developed full ONJ (although things were definitely heading that way! ).The plan as things stand is to have Denosumab injections 3 monthly, and monitor both my jaw and spine, Max Fax are also seeing me between injections. So all things considered I felt I had to but my Oncologist has said it’s kind of up to me if I decide to stop but we could always try extending the time between further, that said Max Fax seem quite happy with me on it 3 monthly at present.
I know I’ve said this before but I truly believe that my jaw only started to heal once the infection was under control and I started taking probiotics and kefir because it was only after I was taking those that I stopped getting infections. In 5-6 months I had as many courses of antibiotics, often taking two strains at high doses, my microbiome must’ve been shot to bits! I think getting that sorted out then gave me more resistance to further infections, but I definitely needed the antibiotics, it was almost a vicious circle, if that makes sense?? I know the Max Fax Registrar who I saw on most visits initially thought what I was doing wouldn’t make much difference but later admitted that maybe it had! I really think it’s disgraceful that your hospital refused to refer you Lyndsey, but although you shouldn’t have had to go privately at least it was successful for you.
At one point when my jaw was at its worst Max Fax spoke to a Max Fax consultant from another hospital who they told me had a lot of experience with cancer patients, reassuring to know they are out there somewhere! Maybe he is the one you’re seeing Jane!!
Keep in touch ladies, it’s so good to hear things have improved and you’re not experiencing that awful stabbing pain!
All the best,
Thanks Lyndsey - I’ll keep in touch.
Im so glad you found the right treatment. My dentist initially refused to believe I had ONJ because she said it was not possible as I’d had no dental treatment - I wish something could be done to improve knowledge of this condition, both within dental practice and oncology.
My max fax consultant takes a great interest in it and has attended conferences in Germany where they discuss cases - so hopefully some progress is being made. Even if it is very slowly.
Please, please don’t hesitate to get in touch - either privately or through the forum - to have a moan; compare notes or for just a (virtual) shoulder to cry on. When I first started having problems and discovered the link with the drug, I couldn’t find anyone who had a similar experience. Then Kate responded and said she had managed to get on top of it which helped enormously.
Last week was the first time in two years that I had been free of either antibiotics or pain or both. After finding my maxfax man, I had Clindamycin for seven days so the infection was under control before the procedure; 24 hours of intravenous and then another week after. I think antibiotics are the standard treatment because it’s infection that causes the pain, but of course, we’re on so many other drugs, we don’t want to live on antibiotics. I think you just have to trust your maxfax consultant on that one. It may be a necessary evil. My problem was that I had to find my own maxfax guy - I was palmed off with some ‘dental specialist’ whatever that is. So at least take comfort in having found the right guy. He should be able tell you how bad it is and whether you’re in danger of it getting worse. At least you’ve stopped the horrible drug.
I realise I should have said I wanted to stop taking the bisphosphonate in 2016 but of course they lead me to believe that if I did, my spine would crumble. So it was a bit of Hobson’s choice - crumbling jaw or crumbling spine. But that is hardly the case. When I told him I was refusing any further treatment, the Prof said, “don’t worry - your bones are drenched in Zometa. It’ll be 15 years before you need anymore.” Then I found out the standard treatment for osteoporosis is ONE dose only because it hangs around for so long. So don’t necessarily beat yourself up if they take you off it. I decided my jaw was more important - especially after hearing about how this drug interacts with our bodies.
Chin up - while we’ve still got them! Actually I still have more than one to keep up.
Thanks for replying Kate. I’m surprised to read that you are back on denosumab after your jaw problems. I’m not sure I’d be happy to go back to the treatment after the side effects it’s caused. They must believe that you’re no longer at risk of ONJ.
It’s reassuring to read that your jaw healed. I’m hoping eventually mine might heal to but at the moment I feel a long way from that!
I’m so pleased that you have taken the time to reply to my original post PA - it really helps to hear of other people’s similar experiences. It sounds like you have really been through a difficult time and makes me realise that I’ve been lucky getting quickly referred to max fax and having a good consultant there.
I also felt my oncologist was very disinterested in my ONJ - like you say, his attitude was “we’ve dealt with the cancer so what are you moaning about” . Well that’s how it seemed to me.
My worry is my jaw seems to be still deteriorating - even though I’ve had no denosumab since last May. I’m not in pain anymore but am taking antibiotics daily. Are you still taking antibiotics?
I’d like to stay in touch as I do feel quite isolated and it’s a comfort to know someone else understands. The pain was extreme and I hope it never returns - I know you’ll understand my fears.
Thank you so much for taking the time to reply and for your kind wishes. It’s so sweet of you and means a lot.
I agree with you about the dentists. When I asked my max fax guy about the lack of knowledge he said he lectured oncologists about BRONJ (bisphosphonate related) so it was taking time to filter through to High Street dental practitioners. The link between bisphosphonates and ONJ was, apparently, only made around 2004 which is, in the great scheme of medical science, a blink of the eye. There’s a six month waiting list at my local hospital for the maxfax team (the cancer hospital would never refer me) which is another reason we went privately. My GP says there just aren’t a lot of them about because it’s a long and difficult qualification becoming both a dentist and a surgeon with a bit of pharmacology thrown in.
We Brits tend to “put up and shut up”, especially when dealing with authority. I certainly have always been a good girl and done as I was told. But as is becoming abundantly clear, we are just going to have to get used to questioning that authority ... and friends on forums like these are vitally important.
Good luck with the Denosumab. I don’t know whether being back on it is good or bad news. I hope it’s good. But at least you have a bit of experience now, and also the right people to help. Very important.
Take good care
It was so good to read your post! Brilliant news about your ONJ, sorry you had to go privately but at least you got the treatment you needed and got rid of the pain! And my goodness can I sympathise with that!! Don’t know if you remember my situation, I didn’t actually have ONJ but did have exposed bone following some dental work and was certainly heading that way. Fortunately due to great support, again from the Maxillo Facial team, my jaw eventually healed and after ten months I was able to re commence Denosumab, but now only have it three monthly, Max Fax still see me and will do any future dental work other than simple fillings. I agree about getting the right antibiotics, and challenging our medical teams if need be, I don’t think my situation would’ve arisen if my then dentist had been more on the ball, so to speak. That said, if any breakdown of the jaw occurs my advice would definitely be to get referred to the Max Fax team as soon as possible.
It’s really “made my day” reading your post, as I have thought about you and wondered how you are doing. All the best,
Nicky - you’re absolutely correct, I agree entirely. With the road that we’re travelling, we really need to help each other to keep going. I know a lot of the time all our symptoms and experiences are different but only if we share can we decide if something is relevant to us or not. I’m afraid with a disease like this, we need to be our own champions. As you say, if your experience has helped just one person avoid what you went through, then it’s worth posting, even if sometimes it sounds scary. If I had been given the correct antibiotic two years ago I probably wouldn’t have needed the procedure, or even thought about it so I hope other people see the post and get the right drugs.
when we’re first diagnosed, we’re all so scared we blindly follow the medical teams, but sometimes we have to be able to meet them halfway and challenge them.
If if you’ll allow me to go off on a bit of a tangent. Some years ago my son was diagnosed with type 1 diabetes. For years after he suffered greatly from breakdowns, blackouts, memory loss and other complications. His medical team put everything down to the diabetes - in fact, always put “poorly managed diabetes” on any form ie blaming him. Desperate, I joined a forum run by one of the diabetic charities. A number of people messaged me and said it wasn’t diabetes and to go and make a fuss at the surgery. They sent all kinds of helpful info. I did and eventually they found he had epilepsy and hydrocephalus. Had the people on the forum not been so kind, I shudder to think what would have happened.
So keep up the good work.
Thank you for your update and how your ONJ was eventually sorted out - albeit at considerable personal expense. I for one have not been bored by any of your updates about this and I'm sure others havent been either. It's always so useful to share our own experiences with each other on here. If no-one did this none of us would know where to start! I for one also bang on about my heart failure problems (caused by FEC chemo) but if I hadnt done I know at least one particular member of the forum wouldnt have sought out the same specialist cardiologist who treated me and would have still been suffering. Unfortunately, with secondary BC, we do have to become our own experts as we are living with this for the rest of our lives but sharing that expert knowledge does help others.
Good luck with the treatment you had and I hope it has sorted out the ONJ and you are out of pain now.
I cannot sympathise enough. Other members have been bored in the past by me ranting on about this. Here’s my experience - I hope it helps.
I was put on Zometa (another type of bisphosphonate) in 2013 when first diagnosed with Stage 4. I have always been treated at one of the main, cutting edge cancer hospitals in the country, if not the world (according to them). In 2016 I was referred to a ‘dental specialist’ at the hospital because my teeth were becoming loose and I was in agony. She took a five second look and pronounced that this is what happens if you’ve been on Zometa for too long. So should I stop it? Oh no, it’s such an effective treatment for bone mets. What’s a little toothache when we’re saving your life? In 2017 my cancer mutated and I was put on a drug trial, overseen by an eminent professor, which still included Zometa. As recently as last June the dental specialist wrote to my GP insisting I didn’t have
Necrosis and should continue with Zometa.
I can’t tell you what the last two years have been like. My dentist washed his hands of me - said it was down to the hospital. The GP very reluctantly gave me Amoxicillin but only if I insisted. It made no difference. One back tooth came out leaving another wobbling badly. The gums were inflamed and infected - the loose tooth was like a dagger. The ‘experts’ told me to keep it in. The oncologists didn’t care. Eventually the second tooth fell out. My only friend was my hygienist who was terrified she was going to cause sepsis but kept on because she felt so sorry for me.
I was so miserable I stopped all cancer treatment. I can still see the shocked expressions. I had no interest in living with this misery. I can’t emphasise enough how awful it was. I was on strong opiates which meant I was severely constipated. I couldn’t eat anyway and lost 4kg. And yet they thought the cancer treatment a success.
But there is a happy ending - although very expensive. In the middle of another tear-stained, pain-filled night, on the floor, clutching my husband, we decided to go private and blow our savings. We found a maxillofacial surgeon locally. He looked in my mouth, confirmed it was, indeed, necrosis but first of all said he needed to make me comfortable and wrote a prescription for an antibiotic called Clindamycin. Apparently penicillin isn’t effective on necrosis. Within three days the pain was gone. A week later, he operated, cut the dead bone away, sent a biopsy to make sure it wasn’t cancer (thankfully it wasn’t) repaired the gum and gave me intravenous antibiotics. Job done. Fine now.
There was a lot of head shaking on his behalf about what I’d been through but he said most doctors, especially oncologists, still don’t appreciate the link between bisphosphonates (any kind) and necrosis of the jaw, especially in post-menopausal woman whose teeth and gums will be suffering from losing oestrogen anyway, never mind the impact of cancer drugs. They are also victims of their own success because the longer we all survive, the more damage can be done by the drugs. In fact, the dental specialist at the hospital’s comment was, “at least you’ve lived long enough for your teeth to fall out”.
So here’s what I’ve learned - if you’re in pain, it’s probably caused by infection which is caused by blood not getting through the dead bone. If nothing else, treat the infection with proper antibiotics. If penicillin isn’t working, demand another type. It cost me £3,500 but it was worth it. I hope you can get similar treatment for nothing, as we’re supposed to.
You’ve probably dozed off by now - sorry. Good luck and if you ever want to compare notes, don’t hesitate to get in touch.
How horrible for you. I know a few ladies have had ONJ but is sounds like yours is particularly bad. I do hope the pain subsides and there is something that can be done to prevent this happening again.
I was having denosumab injections up to May 2018 as my oncologist feared I would develop bone mets as there were a few suspicious areas they were concerned about. Oncologist said it was a precaution.
I had no dental treatment but started to experience jaw pain. I mentioned this to my oncology team and they referred me to a maxillo facial consultant. He confirmed spontaneous osteonecrosis of the jaw. By this time I had exposed bone and was in extreme pain. Fast forward 4 months from then and I am not having denosumab any more - so am having no treatment apart from anastrazole, for the cancer. I am on doxycycline and mouth wash for the osteonecrosis and no longer need tramadol for the pain - so that’s good. However I’ve now developed a second area of exposed bone, so even though denosumab stopped in May my jaw is still deteriorating.
Oncology are leaving max fax department to it, so this leaves me wondering what the future holds.
No one knows the prognosis and I read on this forum that others go back to denosumab, I’m not happy to do that.
Im upset that even without denosumab my jaw is still deteriorating. Has anyone else had an experience similar as I feel a bit like a medical test case - I’ve had more student doctors looking at my jaw than you’d ever believe! I’m having monthly appointments to keep a check on my jaw but no one is now worrying about the bone mets that they were so concerned may be there before. Thanks for reading my long post.