Information on outcomes of Osteoradionecrosis

Hi Bruce. 

Its very kind of you to share what you have been going through and I very much appreciate it. I am from Portsmouth. England. We have great consultants and surgeons here so I feel confident that they can eventually sort my problems out. I am sorry to hear that you have gone through the same stuff as me. It is very difficult to take when you are given the all clear. For me I thought that I could get my life back on track and for 6 months or so it was. Then this damn ORN began and has gotten worse over the last year. I am in constant pain abd take a cocktail of drugs to manage the pain. I guess the jaw replacement is my only option. Yes the CT scan is to check for a good blood supply in the fibula and also my hips. Thank you for making me feel reassured about it all. I am glad I came on here as  this is not something many go through luckily. Best wishes 

Julia

Could I ask those of you who have gone as far as surgery,how much exposed bone did you have? My patch of exposed bone is growing,but the X-ray seems to show a bigger area of change in bone density. 

Hi Julia,

how are you doing? Have you made any decisions about surgery?

Bruce

Hi Bruce

Good to hear from you. I have a meeting with my consultant tomorrow. It was delayed as I had yet another infection so will discuss it all tomorrow. How are things with you

Julia

Hi Julia,

all good on my end, nothing new which is the best report, isn't it. I hope you have encouraging news from your consultant with a next step which will eliminate your pain. My operation was 7 months ago and the new normal has given me a very acceptable daily life.

Best of luck.

Bruce

Hello Julia

I have just caught up with your posting,  as I  usually use a lung cancer thread.

I developed tonsil cancer,  treated early 2008 with radiotherapy,  no preliminary dental work suggested.  When a decayed tooth had to be extracted 2 or 3 years later,  I  was advised of the risk of ORN,  nevertheless all was well until 2014.  A new primary was diagnosed,  lung cancer this time,  and I  had further radiotherapy and chemotherapy.  Within a few months,  in 2015,  what proved to be ORN developed near the site of the 2008 radiation. 

I don't need to tell you about pain!  More dental extractions were necessary, which had to be delayed until I recovered from another round of chemotherapy.  Infection spread and severe lockjaw left me unable to bear chewing or open my teeth beyond a few mm.  But eventually after several courses of antibiotics,  mouthwash and hot salt water,  the infection has cleared and the pain has either settled or is masked by my lung cancer morphine.  But my jaws open and I  can chew,  although with few teeth and I am a bit short on appetite but I  eat as well as I can. 

For almost 2 years the ORN had been my main issue,  but more recently l have been able to concentrate on my lungs,  although oral hygiene is still essential. 

I am of the belief that the low immunity caused by chemotherapy allowed infection to develop in my jaw,  which was originally believed to be a tumour. 

Very fortunately the ORN appears to have subsided for now,  luckily because stage IV cancer would probably mean I could not withstand further intrusive treatment.  Having begun my relationship with cancer in 1998 when I had chemotherapy and surgery for breast cancer,  I  am neither the strongest nor healthiest individual,  but I  can illustrate that relief from the excruciating pain of ORN is possible. 

I think your ORN is worse than mine and your treatment may need to be more drastic,  I  am just hoping that if my own disadvantages balance this out a bit,  the future holds hope for your recovery from this extremely painful and debilitating condition.  5 months ago I  wouldn't have believed I could cope the way I do now. There is a large area of numbness between my mandible and bottom lip,  so my eating is a bit messy,  but that's  a small price to pay. 

I do hope that you are able to find a suitable pain killing prescription,  and that any necessary treatment is a success for you,  the level of pain you have is almost unimaginable for anyone who has not experienced it.

With sincere regards and good wishes for a successful and early recovery

Jill

Hello

Just wondering if there were any updates with your treatment plans?

Hi there

Yes. I am having a free fibula flap on 18th September. I'm terrified though. A bit if a relief as I cannot open my jaw at all so am on liquid diet. Goes without saying that I am sick of soup and protein drinks. I went out with friends last night and they all had steak while I had tomato soup so will be good to get it done. 

How are things with you and thanks for asking after me

I'm surenyou'll be in great hands on the 18th and I'll think of you as it's my check up day that day. 

I think my patch of exposed bone is getting bigger- it tastes horrid and when I touch it and sniff it is disgusting! 

It's swollen up a couple of times recently but there still no pain with it so I just keep on popping the anti biotics. 

Hi

I have a toothbrush type thing that sprays water out to clean in between teeth it does keep the exposed bone clean. I am glad you have no pain and I hope the bone doesn't get bigger. It's such a horrible thing to have. Take care