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Denosumab and osteonecrosis of the jaw

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Re: Denosumab and osteonecrosis of the jaw

Hi Anita, really feel for you, the problems I had were bad enough! Kefir is fermented milk. You add yeast or bacterial starter grains to milk and let it ferment for anything between 24 - 48 hours. I got my grains from kefirshop.co.uk which came with instructions. It’s very easy to do basically need 2 glass jars with something to cover the tops, a plastic sieve and spoon and plastic or glass jug, it doesn’t like metal! You can watch videos on you tube. You can buy it but I don’t think the supermarket stuff would be good enough personally, and there are farms that make and sell it, but the only one I know of is the Chuckling Goat, as I use goats milk, theirs is great though and freshly made. I don’t think it will help pain directly but obviously if any of that is caused by infection, hopefully it would. It will help your gut microbiome though especially if you’ve had antibiotics. If you decide to try it, contact me anytime if you want to ask me anything. Kxx

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Re: Denosumab and osteonecrosis of the jaw

Hi can you tell me what kefir is?
Hi Windflower my max fax consultant has confirmed that I have onj the inside of my mouth is a mess where they have done the biopsy. I have been on denosumab for over 4 years and I have seen my max fax consultant today who said the only way to stop the pain is to have the operation but they can’t do anything whilst on chemo and my platelets are too low. If I could just stop the pain it would be ok it’s just having to put up with the pain and having chemo is getting me down a bit. My oncologist has said that onj is very rare but I don’t believe that for one minute. I have been told by max fax that if they do the operation they will have to rebuild the jaw using a bone from my leg!!!
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Re: Denosumab and osteonecrosis of the jaw

Hi Windflower, sounds very similar to the position I was in. I didn’t have denosumab for 7-8 months and my scans remained stable (I have bone mets but only to make upper spine), my Onc explained it remains in your system for a long time and had no concerns about me missing so many treatments. I still have concerns about it though so I’m having a dexa scan and if all is reasonable enough, which I doubt, then I am going to have another break at my request. Not sure how you know about onj, my problem was my gum broke down which obviously wasn’t good. I was getting infections and had several courses of antibiotics in 5 months. I then started making my own Kefir, not one infection since November and then things started to improve. The Max Fax team were amazed and have asked me to take them some when I go for my next check up! 

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Re: Denosumab and osteonecrosis of the jaw

Windflower
You are like me with the worry of it all ..I am always trying to read up on more info on this ..one article I read said that the first 12 months were the most vital and then quarterly is proven to be enough. My oncologist insists monthly but I had mine yesterday and today I'm more achy and all my teeth seem sensitive !!
I did switch to 6 weekly last year and felt better but it's back to.monthly now. Also at my hospital it stops after 3 years so December I'm done! !
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Re: Denosumab and osteonecrosis of the jaw

Hi ladies,

I can't offer any advice, I'm afraid, but I am worried about denosumab and ONJ.  I have just had dental treatment involving removal of a crown and decay in the tooth below and have an temporary crown until two weeks' time.  The dentist asked me to obtain permission to do the procedure and this was given.  I haven't had denosumab for six weeks and have to wait for the next lot so will have missed two injections in all.  When I asked the dentist about the decay he said it was below the gum line and into the root of the tooth.  I am now terrified that I will get ONJ.  I have multiple bony mets which a year ago were "stable".  I had a CT scan on 10th May and await the results so hope they are still stable.  How do you know you have got ONJ?  Do you get lots of pain or does it just lie there silently?

I have been on denosumab for around two and a half years now and I know the longer you have it the more chance you have of problems.  But what can we do?  We have to take all these medications or be at risk of something worse.

Hope I haven't made you all feel worse!  I will look up the website to try to find out more about it.

Windflower

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Re: Denosumab and osteonecrosis of the jaw

Anita

I'm not a fan of denosumab after over 2 years either but a dental x ray showed no problem with onj. .my teeth are in a terrible state, gums sore and I have a swollen tingly left cheek. .but oncologist says it's important for me to have it monthly for my extensive bony mets .

Reading on another website. .this onj is more common than the 1% they quote ..even hospital dentist said yesterday they are being kept busy more with it.
Denosumab interacts with paracetamol and a lot of painkillers and chemos too. Google denosumab interaction and u will get a list of 200 drugs that can cause problems with it.
Hope u feel better soon.
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Denosumab and osteonecrosis of the jaw

Hi ladies. I am looking for advice. I have been told by my max fax consultant that I have onj due to having denosumab. My oncologist has now stopped this as I have to have an operation to have the dead jaw removed.
Basically. I had a tooth out and then they decided to do a jaw biopsy because they thought I had cancer in the jaw this then resulted in onj.
The problem is I am in horrendous pain, both with the trapped nerve and the jaw.
Really I want advice on what people are taking to manage the pain. I am allergic to codene so have been taking shed loads of paracetamol and naproxen. The pain does ease when I have my steroid tablets after chemo but that is only for three days.
Your advice will be a great help xx