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

Dear Brian, Altho I am pretty sure that I can't really express this right, I want you to know that your above post has given me alot of comfort.Since John's diagnosis, surgery and rad tx., I have been struggling daily with guilt. His diagnosis and treatment, including selecting the hospital and surgeon happened so quickly that not only were our heads spinning, I did not have time to do any research and after meeting the surgeon,John's attitude was "don't tell me anything, just get it done" [ however I did find OCF] Since his release from the hospital I have spent many hours here and have been filled with awe, confusion and frustration at how little I know compared to what I read here. Thanks to you, I'll sleep better tonite. Amy

Amy, I appreciate your comments. But sometimes my blunt manner, particularly in print without the nuances of tone or eye contact creates offense, which I clearly have done. Others here are much better at being

Brian: Thanks for the clarification, but no offense was taken and my reply was not meant to sound defensive... BY GOD, we are all on the same team here and the constructive exchange of ideas on this forum (even IF they had been offensive, but weren't) is a crucial element to long term survival of this cancer.

Your perspective is vital to my understanding of this disease and your guidance, leadership and background prove to continually be invaluable to all of us.

Just a single point of clarification, I DID present to the Stanford Tumor Board and MDAnderson's oncologist presented my case to their board on Thursday evening. I am waiting for their plan results.

I hear that the days of the patient being involved in the board are ending due to HIPPA considerations...maybe we'll hear more about this in time.

I echo Amy's sentiment of appreciation for you, and most importantly the collective power of this board!

Hopefully, together we can have healthy discussions on these and many other new frontiers in Oral Cancer for many years to come. I'm going to do my best job to be here for them.

You could always get yourself frozen like Walt Disney until they find a better method. But today - slash, burn & poison is it.

I honestly don't know whether to be impressed or appalled. It almost reeks of shopping for a doctor that will tell you what you want to hear. You are a unique anomaly here - No one has gone to the extremes that you have. But there is a chink in the armor that Brian pointed out. The real game plan isn't developed in a whirlwind visit at multiple CCC's. My, and most others, diagnostic process took over a month from initial Dx to start of treatment and that was with everything on the fast track. The doctors took the time to get to know me personally and design a treatment plan that would save my life yet allow for some semblance of normality afterwards based on my lifestyle and unique requirements. It was more of a negotiation process, the doctors arming me with knowledge about all of the weapons in the arsenal, which were the most efficacious and the risks and benefits of each. I feel very fortunate that I was gifted with that opportunity - many here are not and have to take what's doled out to them.

I am grateful for those "barbaric treatments" because I have had 28 months of survival that I wouldn't have had otherwise -it's always better on this side of the grass. I have had very few QOL issues - in fact life is quite good today.

I asked my H&N surgeon "why me", expecting some dramatic physiological explanation for my survival and he replied - "just plain luck". And I am afraid that he is probably right, even though my faith tells me not to believe in luck.

I hope that you are here for many years because we have all learned a lot from your journals. I hope that ALL of us are here for many years.

Every person that has died here has been a personal assault on my senses - driven me to cherish, even more, each day with the ones I love. I carry on like many others here do - putting one foot in front of the other until I can no longer go on. The older I get, the more funerals I go to - it's part of the cycle of life and a constant reminder that life itself is a terminal illness and quite fragile.

I truly wish the best for you and that the inner wisdom, that is already inside of you, can come forth and guide your path. Your answer must come from within - not one of us.

You look at Brian, Lance Armstrong and other survivors and what worked for them? - find the best CCC, roll up your sleeves and get on with it. I would venture that any one of those NCCN member CCC's will give your cancer a good run for the money.

Unfortunately, patients can no longer be involved personally in the Hopkins tumor board presentations (they say due to privacy issues as other cases are presented) -- however, I've been involved in plenty of proposal review boards (which operate in a somewhat similar fashion) and we just ask the involved people to come in and then leave, so not too happy with their rationale. I would really have liked to have heard all the opinions and discussion.

Having said that, the plan they proposed for Barry (stage IV SCC tonsil, some b.o.t. and 2 lymph nodes same side) follows NCCN guidelines. As with Sloan (our second opinion consult) and as I understand Anderson as well, they start with chemoradiation and try to avoid surgery because of QOL issues (primarily because of that base of tongue cancer). Hopkins and Sloan even proposed same drugs and same scheduling of them re the radiation. As Barry has posted, we were offered a trial with a new EGFr drug but he decided not to do it as it involves cisplatin and they are concerned about hearing loss with him.

He is probably going to start treatment August 8, which is about a month after the tumor board met -- could probably go a week earlier but meeting the dental onc has been delayed a bit (darned summer vacations!) Based on Hopkins' and Sloan's examinations of his CT scans from November and then last month's, his cancer has not progressed significantly so the timing is not as much of an issue as it might be with someone who had an aggressive, fast-moving tumor.

Hopefully treatments for HNC and other cancers will see a real change with the newer approaches (vaccines, drugs targeted to cancer-specific factors which do not kill normal cells, etc). I am a SPORE advocate for Bill Nelson's prostate cancer project in Hopkins Urology Dept. and it is amazing what is on the horizon -- but it's unfortuntately a long horizon. Right now we have to do with what we have --

Having said that., *I* wish we had Erbitux available now in a clinical setting!

Gail Mackiernan

(Barry Cooper's wife)

The thing about the NCCN guidelines are that there is not EXACT agreement even there.

The flow chart shows the 3 main courses of treatment, with surgery still being the mainstay as 1st line (old school and not in practice at the main CCC's anymore for most cases).

But, there are so many opinions out there the NCCN guidelines are a good starting point.

I think the fact that there are so many treatment trials going on at any time shows that there is a lot starting to happen in this previously neglected area of medicine.

Hopefully, we will all be around to see the improvments reach the point that they have for many other cancers such as lymphoma.

I hate to sound skeptical and jadded, but looking at the HUGE institutions that make billions of dollars on treating cancers, it makes you wonder how motivated they are to find a "cure".

The one's that really are motivated to save people have a genuine passion, and when I've met these shinning stars they stand out from the rest.

Maybe that's why I wanted to compare them and get a sense of their commitment.

Michael,
for the instutions to qualify to be a NCCN member they HAVE to be conducting clinical trials and other basic research to find a cure for cancer. Believe me, if they could find a cure for cancer just think of all the money they would make on geriatric care. There has been an urban myth circulating for years that the big boys are holding back on a cure because they make so much money on treatment but it ain't so. There is not one scintilla of evidence to support this. Problem is, it is more of a medical art than a science and there is disagreement many times in the NCCN guidelines, and it is clearly stated. Further compounding the problem is that all of us have a unique spin on the disease and there is no formula treatment method - but the NCCN guidelines are of result of all 18 or so member institutions inputing what works for them. This is the best there is to offer right now.

So you are a stage IV, have already had a MRND and you have 3 involved nodes -what is there to decide? Radiation and chemo are your best shot to stop a recurrence which could be a major problem. Late stage cancer is ALWAYS a multi-modality type of treatment protocol. Chemo, by itself, has yet to be proven effective in H&N. Today it is merely an adjunct to the radiation and (specifically Cisplatin) gives as high as 13-16% better odds for survival over radiation alone.

Iressa showed great promise until they did a large double blind study (phase III) and found the placebo to be more effective. These are the kinds of studies going on with Erbitux right now. They just don't know yet why iressa, for instance, was only effective 10% of the time. Although that 10% had a very dramatic result. My gut tells me that they are close to solving this. Do you think that all of us millions of baby boomers want to end up with cancer? We solved the hair thing, the ED thing and now it's the big C - aren't you glad that they have their priorities straight.

But that doesn't solve the immediate dilemma. I went to UCSF because the RO there is considered the best in the US. She's also a clinical professor of radiology. They see a lot of H&N patients at Mt. Zion. If radiation is your issue why didn't you try them?

Your dilemma is almost as bad as picking out aspirin at Longs drugs. There are just two many choices. One thing for sure - there is very little room for mistakes in late stage so choose very carefully. Your focus has to be on survival number one. QOL has to take the backseat.

I am sorry if my previous post sounded a little harsh on you - I was just sharing my feelings and not judging you. If I were your shoes I may be doing exactly the same thing. I did a lot legwork researching my team and had complete confidence in them - but I was a pain in the ass - asked a million questions, had to have ALL of the reports, test and scan results, etc.