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
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!
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.