Hi Lyndsey, thank you and good to hear from you. I did, still do but less frequently, use saltwater mouth washes. I know there is one type of chlorhexadine mouthwash which is okay to use long term but I was told by both my Dentist and Max Fax not to use the others for longer than two weeks, so maybe check the one you’re using if you haven’t already. I’m a firm believer in holistic care and do think my supplements, and especially taking kefir daily which I make using goats milk, helped me a lot. I did speak at some length to my Onc when mine started, she said they are still learning about Denosumab because it hasn’t been used for bone mets for that long, as said, the protocol at my hospital has now changed and it’s given less frequently. Have to say though it does seem to help a lot in strengthening bones, I could feel some difference after one injection! I wish you well with everything and please let me know how you get on, Kate x
Kate - thanks so much for taking the time to tell me of your experience. I’ve never been down the homeopathy route but worth considering. My hospice team have set up some acupuncture appointments for me though and I’ll share the results of these. Otherwise I think there’s only so much one can do, as you have found. I spoke with a lady in the chemo ward whose dentist had unwittingly extracted a tooth which left her in hospital, requiring intensive antibiotics. She said it took a year to heal but eventually did. My regime is probably similar to yours but minus the homeopathy. I have a Waterpik with a brush attachment, visit the hygienist every month and use chlorahexidrine mouthwash twice a day. I am going to ask my GP to refer me to the MaxFax department at the general hospital rather than the cancer specialists, although I know that this condition has largely caught out the medical profession. When I asked why it had come about, the dental onc said that historically people were never on bisphosphonates long enough for them to understand the issue. In other words, secondary patients died within three years of diagnosis before their jaw bone started to crumble. I suppose we’re victims of success in one way. Glad you’re doing better. Keep it up. Lyndsey x
Hi PinziA, sorry to read you’re having such a bad time of it. I’m not sure the jaw problem was worse than the cancer diagnosis but, all things considered you’re right, it did cause me more stress! I think because nobody really knew what had caused it and it’s very much watching and waiting to see what happens and then there doesn’t seem to be a lot of options. I consider myself very lucky that things resolved and I wish I could offer you more support. The Max Fax team couldn’t tell me why mine had healed but felt the saline mouthwashes I religiously did throughout the day helped and although they didn’t say anything in favour of the kefir I made and supplements I took, as I’ve said on here before, I didn’t get another infection after that and they did imply keeping infection free had been a factor. I also saw a homeopath and took a couple of remedies which I felt did help but I couldn’t say for sure, I hope you get some help and things start to improve for you very soon. Kate x
Hope you don’t mind me asking ... what treatment does the max fax surgeon use to keep your ONJ under control? My medical team (including dentists and max facial team) all tell me nothing can be done.
Some really interesting posts here - especially Kate’s comments that the jaw problems are worse than the cancer. Totally agree. My cancer (liver and bone mets) mutated in 2016 and I was put on a drug trial at a specialist cancer hospital in central London. Around that time I started having ferocious toothache which my dentist said was caused by failing gums. I was referred to the hospital’s “dental oncologist” - who had a very unfortunate bedside manner (she would communicate with her back to me). Her diagnosis was “well, that’s what you get when you’ve stayed on Zometa for too long.” I believed my spine would crumble without it and no-body suggested coming off it. I’ve been told there’s nothing can be done. My (expensive, private) dentist doesn’t want to know and says it’s the doctor’s problem. The doctors want me to go to the dentist. After three visits to the hospital dental specialist I decided to come off all cancer treatment although I’ve now agreed to a compromise of Fulvestrant. When I told the Professor that my teeth falling out was the final straw he said, “you don’t need Zometa, your bones are drenched in it, it will last 15 years”. I too have a permanently swollen and painful jaw and am going to have to have another argument with my GP to get more antibiotics. All the medical team do is moan about the amount of ibuprofen I take. Over the last two years I’ve had gold star cancer treatment but now I’m happy to let nature take its course
Jodie, as people have said changing to denosumab might help. Also i wanted to say that when i had problems with teeth breaking up etc my nhs dentist was just cross that i kept on coming back, she had never heard of denosumab and didn't agree that i could not have extractions or injections( i'm on constant chemo really)
Anyway i decided i would fork out a little more money and see a private dentist.
Best move i ever made, he knew all about bone cancer treatments and that i couldn't have invasive work done. He sorted my whole mouth out and was very kind, the difference in payment wasn't enormous by any means. Maybe i was just lucky but it's worth a try if you can.
Hi Jodie, I agree with Nanofthree and ff, I had problems with my jaw following some dental work and it really looked like I was going to develop ONJ. I had to stop my denusomab and was referred to the Maxillo Facial department. In total I missed 10 injections (including the time around when the dental work took place and the months after my jaw broke down), I thought it was less but my Onc says not, and I’m back on Denusomab but 3 monthly. Luckily my jaw has now fully healed but the advice from the Max Fax team was invaluable and I would really recommend seeing them, if you haven’t already? Surely you can have a referral? It was actually my dentist who referred me, my Oncologist was kept in the loop so to speak, but initially left that side of things to them. Also, even though my jaw has healed they are keeping me on their system so if I need any dental work in the future they will assess me and if necessary it will be done by them, obviously not simple fillings and such like. At the time, I said to friends that the jaw issues had probably caused me more stress than the actual cancer, so I can appreciate what you’re going through. Take care xx
Jodie, Don't play around with ONJ. Please go see the specialist that nanofthree suggested. ONJ can get nasty. I'm sorry this has happened. We all have enough to deal with. FF
Jodie, I am so sorry to hear about your jaw problems. I have had ONJ since 2012 when I was on Zometa. It started with two teeth which went bad. I have been unable to have them extracted because of the ONJ, so I have to take antibiotics every few weeks when they get infected. I was taken off Zometa and put onto Denosumab which I have every eight weeks. I think it is a kinder form of treatment. Sounds dreadful that you are losing parts of your jaw. I see a maxillo facial surgeon at my hospital who seems to have kept mine under control. I do hope you find the help you need. I think there are more and more people getting this as life expectancy with secondaries increases. I have a permanent swelling in my jaw on the side of the onj. As if we havent got enough to contend with! X
A few weeks back a lady wrote here about this problem, I have messaged her privately and maybe she will be able to offer some advice, but if not, I am sure there will be someone coming here who can help. Just wanted to acknowledge you, wishing you the best solution x