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

I have read this thread for some time now without comment. But I wish to make two brief points. It would seem from many comments here that many do not realize that IMRT isn't available to everyone based on the extent of the suspected infiltration of the disease. As a stage four patient, I wasn't a candidate for it, and no amount of demanding it etc., would have made any difference. With suspected tissue involvement even if microscopically small, in a large area of my head and neck, the old standard was considered, for me, the gold standard. Sometimes a greater area of radiation is appropriate, even if xerostomia is a guaranteed by-product. Is a chronically dry mouth a pain the ass? You betcha. But I sure am glad that there were no stray areas of tissue that harbored a few malignant cells living when they were done with me. Especially given that there are so many doctors just now getting up to speed on the new radiation technologies in H&N, unless the primary is small and isolated, there are issues of radiating enough area to a clinical effectiveness that completely irradicates the disease. Also it is not uncommon for the workup for IMRT after simulation to be longer. As I have posted here many times, the radiation oncologist/team has to plan many different aspects of this, the contours of the beams in the tissues, the amount of radiation in each, the duration of the beam in each etc. etc. This is a much more involved process than conventional radiotherapy was, where a few isolating lead blocks outlined the form and contour of the radiation.

I am also struck by the amount of second-guessing that is taking place. Most do not have the luxury of traveling to have multiple consultations, let alone the ability to have treatment anywhere they choose. That someone can go to the kinds of institutions with teams that have proven track records that are the envy of the rest of the world and come out of it still undecided about things, strikes me in a funny way. The abcense of a team being the most obvious. Do any of you think that in a month of traveling around the country talking to God knows how many doctors about things, you are every going to know what the team from ANY major CCC knows - and based on their experience - chooses for you as a treatment? Who that is posting on this board thinks that they know enough about the Erbitux trial and the drugs benefits to decide if this drug - which we do not know the long term benefits or risks of - is going to have significantly better outcomes five years out from those who do not have it? Who knows what the long term negative reactions to the drug are going to be? No one. Everyone here is talking like we are referring to the Holy Grail. When you have been around awhile you will be able to make a list of all the POTENTIAL beneficial new drugs that just haven't panned out in the oncology world. Or perhaps I should ask a couple of patients I know that were in the early trials of the most common drug we now use that are deaf as a result of the doses they received

Wouldn't it be nice if the hoards of "specialists" really knew what they were talking about with their decades of 'experience'...?

As easily evidenced by the fact that not one team has a consensus with any other CCC team, no one way is the right way to treat this terrible disease.

So far, the only tried and proven methods are a disgrace to humanity and have horrible, unacceptable failure rates, not to mention barbaric, centuries old technologies.

I understand the points made by many about all the "wonder drugs" that come and go, but frankly I am willing to take an educated risk if it makes sense.

It's too bad that every team I've seen gives me different prognosis, treatment plans and protocols, otherwise my decisions would be easier and faster.

I am using the healing time post-surgery (when no treatment can be done yet anyway, since I had the surgery just two weeks ago) to determine what I think is best for my long term survival, and hopefully learn more about the right way to beat this dreaded curse.

I am having my tooth extraction done on Tuesday in SF, and expect little swelling, etc since I've had these same teeth removed on the other side with no problems.

I have simulations and mask making etc tentatively scheduled once I have healed from the tooth extraction. (1 to 2 weeks)

IF I hadn't traveled around the country, I would not have ever known to have the teeth removed in the 1st place, since the rad team at Stanford has never even asked me to see a dentist, much less have one on staff.

So, I learned quite a bit in my travels and have a better handle on things then I did before, not the least of which is having the surgery was a BIG MISTAKE. My hope is that my information gathering will be useful to others as well.

Despite the surgeon's protestations to the opposite, the other ENT's I have seen say the surgery was unneccesary, and it looks as though he didn't get all of the primary anyway (or it's so agressive it's grown back measurably in less than 2 weeks post op).

I don't think Stage IV automatically precludes a patient from being a good candidate for IMRT, at least a couple of the best Radiation Oncologists I've seen have said they would prefer to use IMRT if the trials permitted, and this is even after noting the perinural involvement, mets to the 3 nodes, etc.

All this goes to show you that there is SO much left to learn about this disease and even the world's best are very much in the dark.

So much of it is chance, guessing and hope.

Then, when you weigh the possible conflicts of interests, (this Dr in on payroll for this drug company, this school receives grants from this radiation equipment company, etc.) It is not so cut and dry.

I don't have blind faith in the medical establishment and will continue to question everything, with the goal that it doesn't interfere with my success.

This is why this forum is one of the most beneficial resources for anyone facing or dealing with oral cancer.

The strength of this board is in the feedback, responses and input from everyone and I appreciate this more than I can ever express here.

Michael - Your posting seems like you have taken offense to mine, and I did not post with the intention of creating offense. But with all the discussion of IMRT, Erbitux etc. I wanted to make a few points about them in general, and not specifically in reference to your search for the best answers for your own situation. Your thread offered the opportunity to make those points and they were not directed at your decisions specifically. As to the travels and the search; I said it is unusual for someone to have the resources, time, or the determination to search through all the different institutions for answers. By stating that I didn't mean to insinuate that it was wrong, just that we haven't had anyone here have the opportunity to do so before.

Some of the points that you make are valid. But the cancer treatments that we have today, as destructive as they are; such as systemic chemo that poisons more than the cancer itself, radiation that also destroys surrounding healthy tissues, and causes life long complications and more, are the best that there is today. It SUCKS