Osteoradionecrosis - any experiences with treatments?

Hi and welcome. 

What treatment are you having? 

you could add your post to this thread

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/295056/osteoradionecrosis-of-the-jaw/2166007

Perhaps Shaun22 can help if he is around. 

Vinod Patel is the chap you need to see

Guy’s hospital. They are pioneers in a treatment called PENTOCLO which is a combination of two drugs and vitamin e 

There have been some very good results 

Is any body dealing with this problem at the moment who wishes to discuss it with me here?

Hi Bryansy. I don't mind discussing if it helps. 

Thanks Shaun

i have read your post and found it very helpful i know the basics of ORN .i can see you have been through a lot with it so thank you for contacting me. I had oral cancer of the gum 11 years ago and had radiotherapy chemo and a neck dissection but I am a lot older now 81. I am seeing the maxi facial team and am on antibiotics but don’t know what other treatment I can get . The ORN developed in the Maxilla when a tooth came out one which had been fractured I hope to ask Maxifacial consultant what the treatment is and any prognosis but so far not made much progress. Anyway Shaun thank you for being so kind to talk to me and to reply you have helped me already. 
i hope you are getting some relief and you have got good advice and help

Bryansy

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Thanks Bryansy.  ORN is a very and at times debilitating condition . Have you been told about the RAPTOR trial looking at medication PENTO. From what I know if it's at an early stage it's more manageable with medication, mouth washes. However advanced ORN usually involves pervasive pain, infections, pathological fractures and oral cutaneous fistulas.  I do hope you can have conservative management. As you've read i had advanced ORN and therefore required extensive surgery and reconstruction.  I see the surgeon tomorrow so will find out if I require another graft on the external skin paddle which is quite thin. If I do it'll not be as big as the free flap scapula operation and will be likely a graft of skin harvested from my shoulder. I will update progress. Currently I have no infections but eating is a bit challenging due to nerve damage and biting my lip and inside of my mouth. Ulcers are a pain. Saying this I am getting good nutrition and getting used to the reconstruction. Wishing you all the best and please let us know how you get on. There are a lot of supportive prople on here. 

Thank you Shaun glad you have no infections and getting good nutrition best wishes with your visit to Surgeon and thanks again for helping me.  I will let you know how I get on 

Bryansy

Once you have it .the only way to get rid of it is having the affected bone removed, but,  it can take years to develop to the point where that is needed.  If you are interested in slowing it down,  try near infrared light from a strong light,  close range,  15 mins per day, and good nutrition, and stop and bad habits, smoking, drinking, drugs etc  Possibly it will progress at very slow rate and you'll get quite a few more years before you need major surgery and reconstruction.

OzStu said:

Once you have it .the only way to get rid of it is having the affected bone removed,

There has been much success with PENTO and PENTOCLO so that’s not quite accurate 

Well,  I used pento when I had a couple of teeth removed.  My understanding is that it is a preventative measure to stop orn developing.  I know there are people who have had exposed bone from tissue erosion and that is feature of ORN as well as being a prelude to ORN.  And pento has healed it up.  But the thing is that the bone underneath was still alive  Once that is dead you cant revive it.  Although pento may stop the dead part expanding any further.  Yes, by all means get on pento,  and I'd still use the red light.  Pento works by making the blood cells more spongy and compressible,  so they can squeeze through vessels that are smaller then one blood cell,  like a mouse can squeeze through a crack 1cm wide, so you get blood flow where it has previously been blocked.  Near infrared light works by expanding blood vessels and also charging cells with energy in a similar way to how plants use photosynthesis allowing them to survive with less resources from blood supply.  I used both prior to my molar extractions and the dentist commented that my bleeding after extraction was as good, if not better then someone who had not had radiation.  My sockets closed in less then two weeks and follow up x-rays two months later revealed complete socket fill in with new bone.  I was using the red light as well as pento.