They say it takes 50Gy and above to kill SCC, but your right, higher is really needed, and went on to get more opinions when two centers only offered 50Gy for my recuurence, which is often the case, 50Gy, 25 sessions, but I had boost doses of IORT too at another CCC, which RO said 50Gy wouldn't work, so my total dosage was way beyond that. Certain primary areas need more like 66-70Gy, and other specific areas usually less, depending on many factors, including toxicity level limits. It's also more the mandible, than the Maxilla at risk for ORN, 60/30, those that had brachytherapy, used biphosantates, besides having had extractions, and depending on radiation dosages, areas. We probably see more ORN in oral vs oropharyngeal radiated cancers. This is just a discussion, nothing in front of me with stats, but my recollection. I posted a while back an article on ORN.

I really hate mentioning this but ORN can occur anywhere, including the spine, or so I've been told as the vertebrae stopped producing marrow. It started with C-3 and the last MRI showed C-1 to C-7. The only bisphosphonates that have ORN risk are the long term injectibles. The oral versions are actually used to treat ORN of the mandible. It makes no sense to me that something used to treat ORN can cause it. Some studies I looked at were using people with radiated mandibles and the rate of ORN was the same as people not taking bisphosphonates, around 10%.

One of the reasons the mandible has such a high rate is the size and density of the bone.

I guess we were talking more about ORNJ, osteoradionecrosis of the Jaw. Thanks for the ORN info. Here is some further info on BRON I was reading, if you don't already have it. Good luck with the spine issues or at least no further progression, I hope regression, if that is even possible. I'll have to update with my my EEG, EMG, and MRI results, which I have, but waiting to speak with the doctor.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927357/

Thanks for the article, Paul! The drug he was on was alendronate which contains nitrogen. The rate of ORN, in the article, of IV bisphosphonates was 12% vs oral at .04%. This is consistent with all the studies I read. The guy in the study also had radiation but not directly to the mandible from what I could tell. This is consistent with what I am experiencing with the cervical spine and maybe more. I stopped getting scans because of the breathing issues. It really took away all the worry not knowing. Funny how that works.

I am convinced blood supply issues from the radiation is what is causing all my problems, as well as all serious late effects of radiation. I believe I have a pretty compelling case getting ready to present to some doctors at the major cancer center here. I was able to effect changes in autonomic nervous system functions by modulating my heart rate and able to reduce functions and cause neuropathies around the brain stem by not forcing the heart rate up. I can duplicate this pretty much at will now.

There are only 2 non-nitrogen bisphosphonates and I was using one because I believe the nitric acid cycle causes metabolic issues because they interfere with ATP (adenosine triphosphate) as the article above suggests as well. This article just gives more credence to what I am doing. If I can get an RO excited enough about this, maybe we can apply for some funding to research it further. I believe I have a few blood chemistry tests that may be used as a baseline to gauge success of a variety of possible treatment options.

If I could get into the autonomic nervous system center at Vanderbilt, they could measure ANS functionality with some of the physical things I've been able to duplicate to help understand this better. It explains the baroreceptor dysfunction studies that were all out of Vandy, too.

I know I'm in the right track, I just hope I can push the boulder further up the hill before the heart or cardiovascular system in general fails.

I'm very interested in hearing your results, especially the EMG's. Had my muscles not atrophied in the back, I believe they would have diagnosed me with ALS, which I don't have. They were too worried of puncturing a lung to proceed.

Uptown and Paul, you are very knowledgeable. I've read quite a bit about oral cancer but hardly anything on rads. I saw the RO look at columns of figures when he mulled over how much radiation I'd had on my good side: that must be the map you are talking about.

Just to make life interesting one of my crowned top incisors snapped off at gum level today, so even with my little dental plate in I have an unsightly gap now:(

Have rung hospital and will wait for an appointment. It's on my good side too but closer to the centre. I'm hoping someone can just stick another crown on for now.

Looking into the future though, the plan to make me a better plate will have to be re-examined because it's going to have to cover many more than the four teeth I have on it at the mo.

As far as "grays" go, I was told that we normally have 10 a week so standard six week treatment = 60 grays. That is all I know about it. It's an area I should research more.

Alpaca, I don't know about down under but up over, radiation issues aren't studied much and finding healthcare providers with enough knowledge to help is virtually nonexistent. It is the highest cost of aftercare yet the least understood. There are some discussions with very knowledgeable and skilled doctors that have baffled me, to say the least. I think it is because of the randomness of how symptoms present that make it all seem much larger than it is. I have been told by many that it is just premature aging and we just have to accept the toxicity of treatment adds 20-30 years to us.

A good dentist can help extend the teeth with the most serious abfractions before they break off. Crowns are good if they extend deep enough into the gums to prevent abfractions but some dentists don't and the crowned teeth even break off at the gums.

As far as researching more, my feeling over the years has been to keep away from that. I don't know if that has helped or hurt, though. I do know of the studies of more advanced late effects of radiation, none of the subjects have lived and I have, so far, outlived almost all of them.

We need more studies to identify this earlier on and treat it before it becomes a spiral to death. With the likelihood of the problems coming 6-20 years after treatment, there is no incentive as positive outcomes are based on 5 year survival rates.

As far as understanding IMRT, I would say you can familiarize yourself with it, but not much beyond that, unless you're a Physicist or something. it's very complicated to truly know, and beyond my grasp.

I have copies of my IMRT treatment plan report, cumulative dose volume histogram, fields in plan, which I needed for a CCC consultation.

Alpaca, I have a drawer full of various dental appliances that were made for me since my OC diagnosis. I have the usual fluoride trays and I�ve had night guards made, both upper and lower ones.

Because of some on-going issues, a few years ago I had what they referred to as a �splint� made. It was similar to the Invisalign braces and was made to cover all my lower teeth. It was thin and I was able to eat soft foods while wearing it.

Because of radiation, my lower front teeth started to loosen. After trying a few different things and seeing a few different dental professional, it was recommended to have the loose teeth removed. First I had one removed, and my dentist (a prosthodontist) made yet another appliance similar to the Invisalign braces that had a �fake� tooth built in. They did this by filling the gap with a tooth like material. This gave the appearance (at least from a distance) of a real tooth. Later I had the adjacent tooth removed, and my prosthodontist modified the appliance to add a second tooth.

I ultimately had all 4 lower front teeth removed, went through HBO treatment again, and this process took many months. During this time I was able to use the temporary �fake� teeth appliances so as not to go around with missing teeth. When I was healed enough from having the surgery to remove the teeth, my oral surgeon gave the OK to start on the process of having a permanent 10-tooth bridge made, which again took many months.

I was really grateful that my prosthodontist was able to create different �fake� teeth appliances that I would wear during this process. Perhaps that is something your doctors could do?

Here is the article I mentioned previously posting on ORN. I can open it, but not sure if one needs to log in.

http://emedicine.medscape.com/article/851539-overview

Paul, good article. I was able to read it without logging in. Thanks!