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