Ah, Michael -- I thought you'd come out to Maryland to see us and help us eat some of this cheesecake (we have now had even *more* food delivered from friends, including a large chocolate cake). I am hiding it as Gail doesn't want to bulk up and the cake is pretty tempting!

Eating everything I want is the only good thing in this nightmare -- we were supposed to leave next week for a month's birding in Australia, dodging kangaroos and cassowaries, and instead I will be fighting a more deadly sort of beast...

Barry

I just want to calrify that I didn't say, nor did I intend to, that you need to see a dental oncologist, though obviously that would be ideal. They are just very scarce from what I understand.

Just be sure you find a dentist who has experience treating other people who have been through oral rad. If you ask around, I am sure there are one or two somewhere in your area. I knew I had found the right one when he asked me with great concern who my rad. oncologist was because he thought there was one in the area who overradiated people unecessarilly. He is just the guy everyone recommends I guess so he gets all the cases in our area. Not that there are hundreds but if he gets all of them he has enough experience to know somehting about what the issues are. His willoingness to undertyand the issue of time urgency in my case was important too!

I wonder why they are waiting a week after simulation to start treatments. Did yu ask them? I had simulation one afternoon and treatments began the next morning. It took aprox. 2 hours to do all the scans and the mask etc. and then they were ready to roll. Did they all say this or just one doctor?
Barb~

Barb, Did you have IMRT? I was told by both the rad oncologist at Dana Farber and the rad. oncologist here that there would be two weeks delay after simulation to program the IMRT so as to do parotid sparing during rad. It actually ended up taking my rad oncologist here three weeks, which annoyed me. Apparently, it's a big job, even for someone who knows their stuff and usually there's a line of folks ahead of you waiting......

I forgot there was more I wanted to add to the post above which is that it could be that I was told that would be the dealy because I was stage II and there was less urgency as they saw it. But the Dana Fraber folks seemeed to think there was some urgency so I'm not sure. I just assumed that was pretty standard after hearing the same delay would occur from more than one CCC.

I just landed at Oakland and will be home in about 3 hours.

I'll give the board an update on all when I get settled.

Thanks as always for the support...

- Michael

The best place to get a referral to a dentist who deals with rad patients is from the rad department. That is what I did, and I could not be happier. Also check with your local dental school for a referral. I say this because my dentist is also a prof there.

That said, any competent oral surgeon can pull your wisdom teeth. The type of dentist mentioned above is for after rad and for the rest of your long and happy life.

No Nelie I am having something different. I had no idea about the wait. My Onco/Rad never uses IMRT for the larynx. He told me why but I didn't understand a word he said. I'm glad now. I don't think I could have waited two more weeks. i want them dead and in a hurry dead no matter how slow they are growing.

Michael I hope you found a good place in your search.

hugs,
barb~

Two weeks seems to be the norm for IMRT (post-simulation) -- in any case, that's what Sloan and Hopkins both told us . Barry has his simuation this coming Monday and they wanted to start tomo on August 1, but we have delayed a week as the med onc folks have still not finalized his treatment plan (not entirely their fault, as we just decided at the end of the week not to do an offered trial as it involved cisplatin). We still have to meet with the dental oncologist and of course his scheduler is out until Tuesday, arggh! If Barry needs any serious dental work (and he might he did have some peridontal disease, now supposedly under control) that could delay things more.

One thing we have learned pretty quickly is not to sit around and just wait until someone schedules a consult or meeting for you -- get on the horn and check up on it. Our not doing that last week has cost us some time, luckliy for Barry not a real issue as his cancer is not moving aggressively, but it could be a real problem for some folks!

Hopkins say they have a "cancer team for you" -- and I agree the players are world-class but the "general manager "(if there is one) seems to be a very casual person about coordination. I am a very organized person, ran a big research program with lots of conflicting things happening all the time and I am getting frustrated at what appears to be simple lack of communication. Arggh!

However, am also a quick learner so come Monday things hopefully will start to happen.

Gail Makiernan

(Barry Cooper's wife) He's stage IV SCC tonsil (removed), b.o.t. and mets to 2 lymph nodes.

I would not have gotten IMRT had my spouse and I not had the forthought to ASK for IMRT. At my first meeting with the rad onco, they suggested and I signed for the Iressa trial. After doing some research on this forum and finding out the difference between the two different types of radiation the IMRT sounded like it would be the best. The radiation onco looked at the study and said we'd do the IMRT.

Looking back at it now, I have no idea if I got the IMRT or not unless I demand my records. They told me that I would be getting IMRT, but from what I could tell, the machines all look alike to me. A couple of times I had to go to a different room with a different machine because the one I normally used was out of commission.

It just seems odd to me looking back six months ago and having to bring up IMRT to the oncologist at a CCC, when it seems that it's preferable for head and neck cancer patients.

Jen

Jen