Colleen,
We've actually had many discussions about scan safety and radiation exposure from them

Go to this link and click on "Radiation Exposure Levels" http://www.oralcancerfoundation.org/facts/radiation.htm

CT is definitely radiographic and has the highest exposure of any diagnostic scanning modality.

I wonder what would be the different exposure with a PET/CT? This wasn't mentioned in the above article. I just had my second PET/CT in 10 months at MDACC Houston. A good 30 minutes on the table with this scan. 18 minutes on the chest and pelvis. Then he came back in, repositioned me, and the remaining time was head and neck. I've had 2 CT scans there also during this past year, they were much quicker scans I think maybe because they were just head and neck. Thats a lot of radiation I think in a 10 month period. They told me last week that they were going to back off on the scans for awhile (hope so!) and just wanted to see me in the clinic for routine exam. Nothing is showing up on the scans which of course is always great news.

MDACC also called me and sent me a packet about the Celebrex trial. The Bronchoscopy sounded extremely gruesome. As was explained to me on the telephone, they would want to go in and take small pieces of lung tissue for study....as per trial protocol... YIKES!!! I can only assume that they would put me under for this particular procedure. The young lady on the telephone suggested that I read everything over and then call with any questions or concerns. I think maybe I need more details....

Did they send you a document called the Informed Consent? If so, it should outline all the study procedures that you will endure and should also specify if you will need to be under general anethesia or not for that trial.

Did they send you a document called the Informed Consent? If so, it should outline all the study procedures that you will endure and should also specify if you will need to be under general anethesia or not for that trial.

I spoke with the research nurse/project administrator today.....Cindy Duron....She indicated that I would be a perfect candidate for the study, exc. that my "definitive treatment" was completed over one year ago. She thinks that they will be required to stay within those guidelines, but she is going to check and see if I can be admitted to the study, based on the fact that I had a PET/CT in December, before the one-year mark.

I, too, will have to find out more about the bronchoscopy and biopsy......and the repeated exposure to the radiation from the scans.

I would love to have such a thorough surveillance program, however.

I doubt that I will have the option anyway. I'll keep you posted. In the meantime, please post anything you find out about it...and about the bronchial biopsy procedure.

I have read about a new bronchoscope that can be used in a doctor's office. Maybe they use that one. It's supposed to be quite benign.

I suppose that a biopsy site would heal quickly and not cause permanent damage to the bronchial tissues.

...much food for thought.

Russell...I see that you are in Houston. I live in central Louisiana, so I could participate without too much trouble. You would have no trouble at all, if you're interested. I hope that you'll continue to post your findings and your decisions about this. Thanks.

I can not take Celebrex, but in this study, it is a voluntary part of the study, so I can opt to be in the other "arm" of the study.

Russell.....When was your treatment? Are you tempted by the trial? Does your doctor feel that it would be a good thing to do? Was your treatment done at MDA?

I recently asked my ENT to view my vocal cords, which have not been normal since my neck dissection. (I think that the nerve was insulted. They have slowly improved.) After puffing some numbing spray into my nostrils, and then some other numbing stuff into my throat, he passed a very thin, flexible fiberoptic scope through one nostril, down as far as my vocal cords. There was absolutely NOTHING to this. I suppose that the bronchoscopy is more involved, but it must be similar. I imagine that the scope will be somewhat larger, if it is going to be able to take a biopsy. Surely for this clinical trial, they will use this flexible scope, and not the old-fashioned rigid scope!

Yes, Informed Consent was included in the documents that were sent. When I reached the part about lung tissue samples being taken, I began to have second thoughts, not to mention cold feet...I never realized the trial would be this involved. Lots more reading to do and questions to ask before I can decide.

Colleen, I think I was picked randomly for this trial...that is to say....my doctor has never mentioned the trial to me. I received a phone call from MDA and then they sent me all the info. I have had surgery to the throat above the voice box with laser at MD Anderson. I am fast approaching the one year mark this April, so time may be a factor also for the trial. To be honest, this trial is much more involved or invasive than I had originally thought. I'm really undecided at this time. Also, I still have to go in every two months for follow up with the surgeon on the treatment that I have had at MDA. Anyway, should I decide to go any further with the trial, I will be sure and let you know.

Russell....Who is listed as the sponsor for this study? On the internet, it said that the U.S. Department of Defense is the sponsor. Is this correct (and why??)

How are the studies paid for? by the U.S.gov't., or by your insurance. My ins. is BC/BS, and they will pay for clinical trials.

I am beginning to waffle some on the idea of having so many biopsies taken....but i will wait and see if they even offer me a chance to enroll. I doubt that they will. That might affect their scientific results.

Also.....did you hear that Congress has cut funding for cancer research, most specifically clinical trials, including those for oral cancer.