just wanted to say big thank you for replying to my question about ONJ.
You cleared up a few things for me. I have been ‘lucky’ so far in my cancer experience (if this is possible)
I had a complication free lumpectomy, clear margins and glands, low Oncotype and straightforward rads sessions. I appreciate this good fortune but to now have to decide whether to have something that might cause further problems but which also might be beneficial is a hard decision. Thanks for sharing your thoughts with me. I really appreciate it.
I have had issues with my jaw following dental work and for a while it did look like I was going to have severe problems but thankfully it eventually healed. When it happened it started with just a tiny bit of bone popping through, almost like when a baby cuts a tooth, but it quite quickly developed into a gap in my jaw with exposed bone, this got infected despite doing regular salt mouthwashes, oil pulling and eating really well. After 5 or 6 repeat infections in as many months requiring antibiotics I was really concerned about my gut biome and took a course of probiotics and started making kefir, it may have been a complete coincidence, and I certainly think I needed those antibiotics, but after that I didn’t get another infection and things very slowly started to improve. A piece of bone had separated in my jaw and it eventually healed underneath that splintered piece, so I imagine that area must be weakened...amazing what the body can do though!
I had to stop my Denusomab for around 10 months and during that time my bones definitely weakened but thankfully I’m back on it now, but 3 monthly whereas previously it had been monthly. I’m still seen by the Maxillo Facial department, who have been excellent. I did ask what would happen if it didn’t heal, and surgery was mentioned, as I can see this being something that may occur again so I wanted to know what they could do.
It was my Oncologist who said to stop Denusomab, Max Fax weren’t as concerned about me continuing with it and just said they would deal with any consequences, so I think they must see more patients with onj than we maybe realise.
I hope your surgery goes well, please let us know how you get on.
For us secondary breast cancer ladies who have bone mets unfortunately we don't really get a choice whether we have bisphosphonates or not as they help rebuild the damaged bone, so I wouldn't think many of us have any regrets. Bone mets can be very painful but the bisphosphonates really do help with that pain as the bones get strengthened. As a primary BC lady given the choice, like you have been, it would be a more difficult decision to make. Having said that I think the dose for preventative measures, rather than actual treatment for already damaged bones, is less, similar to patients who have bisphosphonates for osteoarthritis I believe. Whether that makes a difference I don't know. You are right though that ONJ is meant to be very rare however when I saw a max-fax consultant many years ago he did say it was a ticking time bomb as more people are on this medication now.
Not sure this helps you in any way. Are there other means of strengthening your bones whilst having AIs? Such as calcium rich foods and weight bearing exercise? If you have a bone density scan at the beginning of treatment with AIs, and hopefully some follow up ones, I would think a watch and wait approach might be the way to go? I'm not sure what has been recommended to you so I'm only throwing a few ideas out there.
unfortunately due to denosumab I have developed osteonecrosis after having to have a tooth out. This has caused an open wound in my mouth and a lot of jaw exposure. This results in a lot of infections and being on antibiotics every couple of weeks.
Because my jaw is so week now it’s broken and has since broken again in another place just by yawning.
My max fax consultant says that I have no option but to have surgery because it will only get worse. So on the 24 July I have to have a 10 hour operation at east grinstead hospital where they will rebuild my jaw using a bone from my shin.
Not looking forward to it but hoping I won’t be in any pain afterwards
Sorry Anita I can’t answer your question but I am very interested in why you need this surgery and in Nicky’s response to you.
i am being encouraged to consider starting bisphosphonate infusions given every 6 months to protect my bones from Arimidex. I was concerned about osteonecrosis but was told it is very very rare and as long as I start off as dentally healthy I am unlikely to encounter problems.
Are there many people on here who have regretted the decision to have the infusions? I do know that the risks differ for people who take the bisphos tablets by mouth
Be glad to hear views from my forum friends
I'm not aware anyone else has mentioned on this forum about surgery for ONJ so you may not get any/many replies. I know a few ladies needed intense courses of antibiotics when they had problems but I'm unsure if any had to have surgery. I wish you luck and hope it solves the issue. Hopefully someone will be able to add their experience but I didn't want you thinking no-one had seen your post.
I am due to have surgery for osteonecrosis of the jaw in July and was wondering if anyone else has had surgery and could advise me on what is involved. I know that they will have to take a bone from my leg but just wanted to know if anyone else has gone through this.
Many thanks. Love to you all