i finished my radiotherapy and chemo on the 12th of Sep.ive been into hospital several times due to my electrolytes being way off and the swell in my face and neck
Well ive now found out i have a bacterial infection eating into my jaw bone more than likely another after effect of the radiotherapy.im on strong antibiotics and if that doesnt work the big man at at maxfax said they might have to look at operating on my jaw bone ,scraping away at the infection ,losing my bottom teeth and then a reconstruction of the jaw bone using a piece of bone from another section,all this time i thought it was lymphodeamia But they are not keen operating on me just now as its only 4 months since i finished my treatment. Has this happened to anyone else re jaw bone and infection,The big part thats really irritating is the numbness,feels like you have been numbed after seeing the dentist except mine is constant.My pet scan results for my cancer had not came back yet and the surgeon said he will see better what is going on when he can see the images he will be able to see if the treatment has worked for my cancer and get a better look at my jaw.
Something called Osteoradionecrosis ( orn ) was mentioned tome ? now im getting scared again
Good evening Susie, i have never heard of this, where a bacterial infection is affecting the jaw, as it's not a normal side effect of radiotherapy (as far as i know ) so hopefully its just a simple case of the antibiotics doing their job rather than having jaw reconstruction, which i did have in 2009 using a bone from my leg. As Ray said, Osteoradionecrosis can set in further down the line, maybe after a few years. Try not to worry or Google your symptoms, and hopefully your MaxFax consultant can sort it out , wishing you all the best.
Chris x
Its sometimes not easy but its worth it !
Something called Osteoradionecrosis ( orn ) was mentioned tome
Hi Susie
Who mentioned ORN? Was it your surgeon? It is a possibility even this early but your doctor seems to be on top of it
PET results are usually through super quick and the CT component of the scan should show what the damage is. If it is ORN grab your consultant and ask him about a treatment called PENTO.
Fingers crossed and let us know how you get on
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks for the information about ORN and PENTO, Dani.
Chris x
Its sometimes not easy but its worth it !
Hi it isnt the surgeon that mentioned the exact name of orn that was my retired nurse neighbour when I was telling her that my surgeon has put me on antibiotics and shown me my deteriorating jaw lin
on the dentist xray..I told her what he was saying about the route hes hoping not to do ..hes hoping the meds will help..Yes I looked up orn as I had never heard of it..My petscan was held up a bit then when I had my appointment on Jan 14th the results for my petscan had still not came in..I was really disappointed as it will let me know better about my tumour..The surgeon said the mri images were not that clear and the petscan will also show my jaw better..fingers crossed it is all ok xx
Thankyou Chris :) i sometimes wonder if it will ever end.I still get tired i still have the tube for feeding and ok im managing soft vegetable soup now or scotch broth and can drink but all the soreness on my tongue and as the surgeon said my mouth is still incredibly dry and then the numbness from the bottom lip down,does sometimes affect my speech and can get me really down,but on the other hand im still alive and hopefully the tumour has shrivelled up and gone 
I will need to find out what Pento is
Criss that bridge when you need to. Pento is a drug regime using pentoxifylline which opens up blood vessels and vitamin E which is a powerful antioxidant working to repair radiation damage.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thankyou 
Have you had any news on your PET?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
