I certainly don't profess to understand the science your RO is dealing with comparing all the radiation options so it's difficult for me to totally understand why IMPT wouldn't deliver the least damage in the most effective way regardless of how many gys you have already had or the results of those overlays but it sounds like your fortunate that you have someone who is throughly examining all the options scientifically. Man lets hope you catch some breaks and this cancer can be trumped for good.

David

The reason you "don't understand" is that my RO agrees with you that IMPT would probably deliver the least damage. But so far none of his referrals for IMPT have been accepted if the patient already had two rounds of radiation. I've been researching the heck out of this after yesterday and so far the only IMPT center I could find regularly accepting re-radiation was in Geneva, Switzerland and even they would only accept one prior radiation. Abraham cancer center has a clinical trial for IMPT re-radiation but again seems to be only for one prior radiation.(NCT01126476) I did find an interviews with MD Anderson on why they prefer pediatric or brain cancer patients and even for those they reject some. [quote]Yeah, perfect patient would be generally at this point would be benign tumors and there's a reason for that is the advantage of proton is the dose falls off so rapidly and that's a good thing. You are decreasing the amount of radiation to the surrounding brain, but benign tumors are very sharply demarcated. There's not tumor cells extended beyond them, so that's why protons works well for those. We'd mentioned earlier glioblastoma, we don't treat those tumors with protons and there's reason for that, there have tumor cells that's spread out from them and that's way kind of lose the advantage of that sharp border with protons compared to the standard photon radiation therapy.
[/quote] full podcast Best tumors for proton
The practical problem is that since proton facilities can cost up to $225 million for each one, and the ones open are still in Phase I and Phase II trials to establish that in practice IMPT is as good as in theory and better than IMRT for non brain cancers such as prostate and head/neck, it would be counterproductive for any of them to treat an extremely high risk cohort such as patients with two full prior radiation treatments. There are already a number of articles, blogs etc all citing the lack of "proof" for IMPT.
You are right that I am lucky to have an RO who has already tried to get IMPT for third time patients unsuccessfully so is willing to work with what is available.
charm

I asked about IMPT when I had my recurrence. I got the same answer from a few different doctors. They said that the IMPT beam is very precise, probably too precise for head and neck cancers. Unless the cancer is very well defined and tight, the beam will not hit all the cancer cells around the edges as IMRT does. It does well with childhood cancers in certain places because those tumors tend to have very well defined edges and are typically very tight whereas Head and Neck cancers tend to be a bit more diffused at the edges.

Although there were a few trials out there at the time, no one I was dealing with felt it was a good idea to go off the farm that far when they had so much more experience with current radiation treatments.

My two cents.

Kelly211

I know how hard you pressed the doctors and how diligent you were in going from place to place (just like DavidCPA) did, so your post is very reassuring to me. I had read similar things but it's hard not to wish & hope for some "magic wand". The advice you were given takes the sting out of my RO's telling me IMPT would not take me anyway.
The clinical trials in place will settle this question but , lots of articles point out that so far, the results for IMPT and IMRT for head & neck have not been "proven" to be different.
Charm

Wow!! I thought I was too old to learn something new and disgusting but even if you could find a IMPT facility that would treat you it doesn't sound like it would be to your advantage unless of course your tumor was tight and neat.

DavidCPA

You old? We all know that you are keeping the Fountain of Youth location secret now that you found it. Everybody knows it was in Florida which is where it is according to Wikipedia. How else could you still be biking so many miles after Stage IV cancer?
I'm gonna beat this the old fashioned hard way.
Charm

I'll try and find it and send you a ton of it. Remember I'm with you 1000%. Hell I'll bike up there and kill that damn crap myself if I have to. lol Yesterday I was riding along by myself at 18 mpg into a slight head wind (really struggling)and I look behind me and I see someone slowly but surely catching up so he has to be going 20, 22. Riding into a headwind by yourself is NOT fun. Anyway he pulls along beside me and it's a riding friend who has muscles on top of muscles and veins on top of veins, probably negative body fat, etc. I can hardly breath much less talk and he's talking up a storm. Now he's the one that must have found that spring because he's 75.

Charm,
I apologize for not posting sooner and am greatly saddened by your recent news.
But... I know you can do it!

And I can't resist, in the interest of those of us on these forums past their sixth decade (sadly too few for several reasons):

[quote=davidcpa]Yesterday I was riding along by myself at 18 mpg into a slight head wind (really struggling)and I look behind me and I see someone slowly but surely catching up so he has to be going 20, 22. Riding into a headwind by yourself is NOT fun. Anyway he pulls along beside me and it's a riding friend who has muscles on top of muscles and veins on top of veins, probably negative body fat, etc. I can hardly breath much less talk and he's talking up a storm. Now he's the one that must have found that spring because he's 75. [/quote]

David,
Any "Old Frack" that can still get 18mpg is OK by me. What kind of motor you got on that bike?

Love you guys.

Ooops typing to fast! 18 mph

Hum, 18mpg, must be a Harley.