Nearly four months after radiation I have a badly decayed tooth on my right side. I was irradiated on the left. The X-Ray shows decay going deep into the nerve. I see the hospital dentist on Monday and by good fortune have an RO appointment beforehand. I haven't discussed the issue with the dentist properly yet for various reasons but he seems to be considering extraction of this molar or less likely, root canal. He seems to be in two minds about HBOT.

If I had little radiation to the right side, do I need HBOT? If the medical people "discuss" the risks with me, should I insist on oxygen treatment. From what I can find out, it would be quite doable for me because the treatment is in a place I can drive to (nervous city driver)but it sounds like an almighty pain in terms of time taken. Could it also be overkill for the good side of the mouth?

Yes, you still should do HBO. Scatter radiation has gone on the good side of your mouth too.

As far as HBOT, I had to wait until I had a clear scan, and 6 months after treatment to do it. Some earlier reports suggested it may promote cancer, my doctors seem to think there is some type of risk, and had to visit my oral surgeon a number of times before he finally decided extractions/hbot outweghed the risk, in my case, and had spoken with my RO and ENT. If I didn't really need it, had other options, I would not have any. I read one report that says hbot doesn't promote cancer. Maybe coincidently, but in 2011, a two months after doing HBOT I had a recurrence. You may want to speak with your RO about this.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3510426/

Good luck

When you see them again, make sure to discuss all options. For example, rather than extracting, the tooth can get a root canal and can also be "ground down", forgot the official name, but basically bring the tooth down to the gum line but leave the root in place. If this works then you can avoid the HBOT treatments.

I know abut HBOT but not researched it much at all since thus far that bridge is not on the horizon, knock on wood. So far my teeth are holding up. I have had some dental work done post treatment but it was not associated with the rads.

Thanks! Saw RO and hospital dentist today. Former said I could have an extraction because the radiation (on that side?) was less than 50 gy. But I didn't have an extraction, just a filling because the tooth has settled down and it's quite a useful one for my limited eating. We've bought it a little bit more time.

The bigger part of my life right now is getting from appointment to appointment in car to Park & Ride, then buses with lots of walking thrown in.

Congrats on saving your tooth!!! Every single one is so important. You are very lucky

I'm always happy to hear about successes!

Good news! And thanks for sharing the actual radiation map can be referenced to assess if/where extraction can be done without HBOT. Good to know as this does not seem to be common knowledge.

Don

They say it's anything above 60Gy, in the mandible, maxilla, that is risk for ORN, amongst other concerns, although some doctors say above 45Gy too. Some, with primary tumors in this area do get 70Gy or so, uninvolved areas can be less, and is always best to involve the RO, as was done.

The discussions I had with the RO about dosage was 60gy and above is needed to kill the cancer. Those are average and with contouring and painting and such, a specific area probably can get less than 60 but I don't have any details on that.

I've always assumed but not read for certain that those with more rads to the jawbone are more inclined to suffer ORN later.

Not going to bother digging in that hole until the situation arises, certainly not going to fret about that until that time.

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!

Then a front tooth snapped off the very next day:(

[quote]If I could get into the autonomic nervous system center at Vanderbilt ...[/quote]
What? You signing up to be a guinea pig, Uptown?

[quote]
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. ...

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.[/quote]

This is kinda depressing. We are all aware radiation can result in various long term side effects but isn't it a bit extreme to state we just add 20 years to our age?

As stated, studies into longer term radiation side effects are few, what originates hard numbers about the qualitative and quantitative long term effects?

I totally agree long term side effects are reported anecdotally and apparently randomly other than being related to radiation. Where does one read science based discussion on the topic?

Thanks
Don

Don, I am the pig man as well as the bacon King. I thought you knew that.

Keep in mind, my bizarre journey into cancer world was very unique and because I had an attempt to remove some nodes in a room that wasn't equipped for the type of surgery needed, a node was just poked back in and a piece sent for pathology. Because of this, I had some extensive broad swipe XMRT because of concern for micro mets. In addition, I had lost almost 40% of my body weight yet no new mask was made. I'm confident I was shuffled around when I became the second patient in a new radiation center and just the fact I had to wait all morning for them to get ready for me made me nervous at the time. Looking back, they should have made a new mask at the very least. I was about the last patient my RO had before he retired, too, although he was known as the best in Dallas. I met with an RO once after treatment until 4 years out when I started experiencing fasciculations extensively in the back and neck. When my breathing started getting difficult, I was told I needed to try harder to breathe. When I went from 211 down to 115, I was told to eat more. I was consuming about 3,000-4,000 calories a day at the time. Then complete parastolsis of the digestive tract and inability to swallow at all. These lasted over 100 days. I had somewhere around 50-60% muscle loss! depending on who I asked! but it was extensive nonetheless. I was unable to even sit up because there were no muscles in the rear or back. It was classic lower motor neuron disease with massive cognitive decline.

Given all that, I never read anything about radiation issues. I didn't read anything about cancer, either. My attitude is why would I fill the mind with fear and hope I'm adequately armed should one of many possibilities come to fruition? Everything I have delved into is because it is something I am chasing after about a dozen doctors threw their arms up, declared me a dead man walking and stuffed me into hospice care. Everything for 2 years has been self-care and telling the docs what needs to be done as far as diagnostics or blood work.

I would suggest you not chase this radiation stuff either. If I shared with you my last three weeks, I believe you might understand better. If I shared my last 5-6 years, you would run for the hills. There's nothing in my sights right now as far as curative care. There hasn't been for the past 6 years. I've learned to pick up a "medical twang" in my dialect of hmmmmm. I have an excellent relationship with all the docs I work with now and we openly discuss this in terms of me but more importantly, in terms of how can this be caught earlier and how can it be treated, given there are many possibilities of how it presents and how it should be treated.

If you still just want to read things, I can direct you to many studies. I try to review all studies world wide and research the protocols to find similar things here in the states and then research our available drugs/treatment in hopes of finding something that can squeak out some time for me. I'm not even sure why I'm doing that these days as my only hope for 5-6 years was stem cell treatment and frankly, I'm not seeing anything promising on this front.

So, guinea pig or not, I trudge on. The things I have thrown at it would surprise and maybe shock some. I think I am more like a kewpie doll looking for a new collector.

[quote=PaulB]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 [/quote]p

Thanks for the article, Paul. It was quite informative although I just hate to see marrow issues over and over, if you know what I mean.

[quote]I would suggest you not chase this radiation stuff either. I[/quote]Thanks for the honest yet blunt reply. To date I have not looked beyond today but I was presented with a financial decision that forced me to look in the mirror and really put a number to my remaining days. No way around.

It really messed me up and now all these posts about this long term side effect and that one got me on the path to spin up worrying the possibilities. Kind of scary.

It just caught me off guard and unprepared mentally. I'll take the first fork back onto the main highway of enjoying life today and put the "what if" canary back in the shoe box.

Thanks again,
Don

[quote=donfoo]Good news! And thanks for sharing the actual radiation map can be referenced to assess if/where extraction can be done without HBOT. Good to know as this does not seem to be common knowledge.

Don [/quote]

Does not seem to be common knowledge even among oral surgeons. I went to Oral Surgeon's because the first one I would say brusquely is I don't take insurance and the other one said he needed the map of the radiation to know if he could extract my teeth safely. So after two or three route canals on my lower four front teeth he extracted them, that is the three that were left. Went to a regular dentist who made I shorted middle-of-the-road bridge permanent temporary or something like that which is hard to get used to. I really think I was not given this is just my belief that I would not given true complete informed consent. Of course at the time I started the treatment I did not really have a choice now did I? The cancer was growing very quickly into weeks it went from I could barely touch it too it was changing my voice by pressing on the vocal chords.

So the oral surgeon worked on me I said the front teeth not much of a problem in the back tees to get more radiation and maybe problematical. Well it turns out that since I'm on Medicare Medicare does not pay for anything dental, unless it's done in a hospital. So I had to pay for this I did get Delta dental which pays 25% I don't know if it's a Delta but whatever EDS or something like that and he pays for 25%. I'm very lucky my work my former work gives me doesn't give it to me I have to pay quite a bit for a secondary insurance that pays the 20% that Medicare didn't pay. I'm sure I would've been broke just paying 20% of the cost of my treatments.

Gregor