Hello all.
I have just been diagnosed with osteoradionecrosis of the jaw(ONJ). That means there is exposed bone inside my mouth either from prior radiation treatment, bevacizumab, corticosteroids, or a combination of those things.
Early 2012 I was diagnosed stageIV throat cancer. I did 9-weeks of radiation (I do not know the numbers on that) and low dose chemo with cisplatin, only 4-treatments. I had the peg tube in (twice) and did all the suffering many of you here know all about already. I was lucky though. I believe the last treatment was end of June 2012. Several months later I was told I was cancer free.
Early 2013 ct-scan showed small spot on my lung. Chemo doctor felt 6-month wait on next ct-scan was good idea. I asked "are you sure?" Following week I had prior scheduled visit with radiation doctor and put same question to him. He gave me some talk about new standards, used to be 3-months, but he would do same thing. I let it go.

6-months later spot doubled in size, plus more spots and "ground glass" area upper left lobe.

1 PET scan and a couple of lung biopsies later I am stage IV lung cancer with tumors in both lungs and I find out it is HPV-16 primary from the prior throat cancer. No one bothered to check for the HPV before, apparently.

Okay, so now I'm in a clinical trial using bevacizumab, carboplatin, & docetaxel. I've had 2-treatements at a 21-day cycle. First results show large tumors half former size. Word cavity used a lot to describe places where smaller tumors were, and the "ground glass" area also. Great news.

I've twice had low white cell counts(neutrofil) about a week after treatment. Also I had a mouth infection to which I was advised to see dentist right away. First time dentist found no tooth problems and prescribed clindamycin. The antibiotic worked wonders first time and pain cut in half next day. Second chemo cycle the antibiotic did not help and I found the exposed bone under lower left 3rd molar.

Now, that said, I've just begun to deal with this and I don't know anything yet except for diagnosis is confirmed by oral surgeon. I will share info as we progress. I've seen the pictures on the Internet and I really don't think I want to give up my jaw. I just feel like I've been through enough and can't imagine going there.

My question: can anyone here share experience with this condition? Is it beneficial that I have discovered this early? Honestly, I don't know how much bone has died beneath my gums due to lack of blood-flow, so calling this early may be wishful thinking. Any experience and advice with treatment options would be greatly appreciated.

Word of Warning: anyone who has had prior radiation for head and neck cancer may want to be weary of clinical trials involving bevacizumab (Avastin), which is a VEGF inhibitor. In laymen's terms, it is designed to restrict blood flow to tumors so they cannot grow. In my case this may have been the straw that broke the camel's back in relation to my already thoroughly cooked jawbone. Bevacizumab is already successful and FDA approved for treating other types of cancer. I have squamous cell(as opposed to non-squamous cell carcinoma) non-small cell lung cancer, which is not typically treated with this VEGF drug, but because my primary cancer source was head & neck, HPV-16, I qualified for the trial. My tumors have reduced in size by half in just two treatments. Whether or not that was thanks to the targeted drug or the carboplatin & docetaxel alone, I can't say. Unfortunately, I feel forced to refuse any further treatment with this drug because it restricts blood-flow. The more I think about it I find myself in disbelief that I was ever put on this drug with my history of radiation treatment.

I'm sorry if I rambled on. I'm really just looking for advice about treatment options for ONJ. Again I appreciate any words of wisdom here from those of you who have dealt with this condition.
Thank you.