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.

Thanks Gary... trust me, I know that you and Brian only want what's best for me, and that includes starting whatever treatment I chose ASAP!

I am going to UCSF to have my 2 wisdom teeth pulled, (since it must be under general), so I'll ask for a consult with their RO.

Last time I spoke to her (Dr Bucci?) she was very optimistic about me having a total cure, saying their 3 year cure rate was approaching 85%!

As always I appreciate the comments, direction and ideas!!!

"with surgery still being the mainstay as 1st line (old school and not in practice at the main CCC's anymore for most cases)."

Michael, this really rubbed me the worng way. As Brian pointed out, you have had the rare luixury of speaking to several docs at two of the major CCCs but do you really know enough about what is practiced at the main CCCs in all cases to make this statement? When I went fir an opinion at Dana Fraber, like you, I had already had my surgery. But they would have recommended I have surgery first if I had gone initially. They are the #4 CCC in the country.

One difference between me and you is my cancer was on the upper tongue and surgery was not likely to produce extreme problems that would have hurt my quality of life such as being unable to speak or swallow--whereas my udnerstanding is often cancers on the lower tongue or tonsils have potentially many more complications. So maybe that's why some of the other places told you they would do rad and chemo first and only use surgery after if needed.

I'm certianly no expert either, but I suspect whether surgery is considered to be the first line of attack varies based on a number of factors, even at the major CCCs, which is why the NCCN guidelines are written the way they are.

Hi Michael,
I am appalled to hear that the surgeon at Stanford did not get all the cancer. Did he give a reason? Did he tell you this was a possibility going into surgery?

Also, you said some of the doctors you saw at Anderson and Sloan said you should not have had surgery. Were these surgeons or ROs? Did they give you a reason?

I find it very interesting that they are now doing trials with Erbitux alone. Back in 2001 when I had cancer the second time, the only trail available for me was with chemo and rad. Since back then, you couldn't have any more rad., I had no alternative but surgery.

Hope your mouth isn't hurting too badly today from tooth extractions. Make your decision soon and get your treatment started ASAP, especially now that you know they didn't get it all.

Take care,
Eileen