David

Thanks for suggesting yet another topic to bring up with my RO.
Even though my CCC does not offer it, he will be able to let me know how it compares. I'm hoping that the prior fields did not include this section of my neck much.
Charm

Charm,

my tumor was just behind the area your recurrence is in. I know you had a similar treatment to mine three years ago, but they have made some advances. One of the things my doctor said whenever I would say that other institutions were unaware of these new developments was " I don't know why, we've been publishing our data for four years".

You might mention this to your team to see if they can gain any advantage from those reports. my ENT was Dr. Robert Ferris at UPMC. My RO was Dr. Dwight Heron. Dr. Heron was the guy who headed up the radiology aspect of these newer protocals.

Hope this helps

Definitely sounds like good news... Fingers crossed it gets better.. Hugs.

Thank God for the OCF news feed. I just caught up on it and while it is only an "opinion" piece from NYT about IMPT entitled: It Costs More but is it worth it?
So I will mention the caveats below when I discuss this with my RO late this afternoon. I've been so insistent in questioning my doctors the last 5 years about "how do you know this? ; your clinical experience? an article? a medical salesperson? studies?.
[quote]The higher price would be worth it if proton beam therapy cured more people or significantly reduced side effects. But there is no evidence showing that this is true, except for a handful of rare pediatric cancers, like brain and spinal cord cancer... To generate sufficient revenue, proton beam facilities need to treat patients with other types of cancer. Consequently, they have been promoted for patients with lung, esophageal, breast, head and neck cancers. But the biggest target by far has been prostate cancer, diagnosed in nearly a quarter of a million men each year.
There is no convincing evidence that proton beam therapy is as good as � much less better than � cheaper types of radiation for any one of these cancers. There has not been a single randomized trial, only small, short-term studies.[/quote]
As much as I try to keep up on the research, Brian does it all for us on the OCF News Feed. Like the Washington Post ad says: [quote]OCF news, if you don't get it, you don't get it[/quote]
Charm

The reason I mentioned IMPT is that it was (I believe) designed to treat difficult to reach tumors, like brain, lung, etc. The articles I read (years ago) said that IMPT reaches the tumor without any damage to cells going in or out and when it reaches the pre computer designed tumor coordinates it enters it and conforms to the tumor and like a smart bomb, destroys just the tumor. So when you mentioned your "highly promblematic" tumor I thought that IMPT might be able to reach it and destroy it safely.

David

Your impression is exactly the one I had from my research when this popped up on the forum. I did raise it with my RO with the caveats that I knew it was only proven with brain & pediatric cancer but seemed promising for head & neck also. I was stunned by his answer - even though he cautioned that he did not want to sound cynical nor be critical of the new IMPT centers. He had already referred several of his patients who were all rejected by more than one IMPT center since they had already had IMRT & Cyberknife. He said it was understandable that since IMPT is still seeking empirical validation for non brain cancer and non pediatric patients, that except for those two categories, patients who had radiation twice were not being accepted because it was more likely than not to have failures which would not necessarily be the fault of IMPT yet statistically they would.
He emphasized what has been the story on this forum and several patients experience, re-radiation after the "maximum' is risky. He does it a lot, in part because of referrals from other hospitals, doctors and even other CCC. If he had an IMPT machine, he'd try it but he can understand since they are so scarce why they are being used on those whom they can help the most.
Charm

Okay Here is the results of my RO visit today
As far as IMPT, read the post above. As far as brachytherapy or seeds, he has done quite a few but the "hot spot" problem (the cells right next to the seed) in my case would cause cartilage necrosis in his experience.
So that only leaves Cyberknife. He is getting a PETscan for me next week and then he is going to use some snazzy new technology that overlays the entire radiation fields of my first 4O IMRT over top of the second Cyberknife fields and then adds in the PETscan results of the tumor activity. Then he can see if there are enough areas and vectors to hone in the Cyberknife beams to kill the tumor without causing a cascade of necrosis that would mean I would have to have my larynx out and have a permanent trach. He pointed out that 97GY is quite a lot and there is a danger of closing out my airways entirely plus other very bad results with more radiation..
He thought that the NIH trial Brian found for me would be my only viable option if the fields overlap too much.
Needless to say, my wife was disappointed. It did not help that the resident was so excited to meet me because I contradicted what he had been taught in medical school about maximum radiation. the only good news out of all of this is that the RO feels this is a new cancer, not a recurrence so it's not like this is a totally radiation resistant cancer.
So the waiting begins again
Charm

Not that anyone wants to have a New cancer but if its a better prognosis then yeah!! Hope thy can do the rads!!!

Brotha you and Bev are on my mind an in my heart my friend. I love you both very much.

To borrow your line...Keep the faith

Eric

This is so awful, Charm. You have been through so much and have been an inspiration to so many of us.