This thread has been so much fun, I bet if I started a new one on the subject (food) we are at, it would die. So I'm going to continue the drift off of the starting topic.

Amy, you are right (and so is Brian). Right now you don't need to be concerned about any quality foodstuffs. This means fat of all kinds (very important), Protein (very important), and less important starches and sugars. Ironically the worst advice I read here is "calories are calories" and that is from a "nutritionist"! Ticks me off. The reality is fat has the highest concentration of calories of any type of food and carry important fat soluble vitimins.

{Fat is one of the three main classes of food and, at approximately 38 kJ (9 kilocalories) per gram, as compared to sugar with 17 kJ (4 kcal) per gram or ethanol with 29 kJ (7 kcal) per gram, the most concentrated form of metabolic energy available to humans. (Note that 1 kcal = 1 "Calorie", capitalised in nutrition-related contexts.)

Vitamins A, D, E, and K are fat-soluble meaning they can only be digested, absorbed, and transported in conjunction with fats. Fats are sources of essential fatty acids, an important dietary requirement.

Fats play a vital role in maintaining healthy skin and hair, insulating body organs against shock, maintaining body temperature, and promoting healthy cell function. They also serve as energy stores for the body. In food, there are two types of fats: saturated and unsaturated. Fats are broken down in the body to release glycerol and free fatty acids. The glycerol can be converted to glucose by the liver and thus used as a source of energy. The fatty acids are a good source of energy for many tissues, especially heart and skeletal muscle.}

Protein is very important after radiation treatment because the body is really busy trying to re-build what has been blasted away. The healing process will be slowed down by any shortage of these basic food components.

One of my big pet peeves is the concept of various liquid canned drinks being "all you need" that is simply BULL CRA_ Most that I have seen are not very complete. Most rely on sugar to bring up the calorie counts.

Back to fat, the really important thing here is that you mix in good (plant) fats (and some animal fats) with protein, and plenty of micro-nutrients from colored vegetables and fruits. Use the blender to make it smooth and count the calories so that you are getting 2500 or more per day. (more than that is fine until weight starts to come back.)

Prime rib in the blender is great. a little milk or cream to make it spin. Eggs are also excellent in the blender. Scramble them first then set them spinning. Many of you are new enough to not know about my Whopper with Cheese in the blender. Yes it works and yes it tasted really fine. (simply cut it into about 8 pieces and throw it in the blender with some milk.) Warm in the microwave and you have a meal to brag about.

Last, and back on track, Beer and especially heavy (usually dark) beers can run 200-300 calories per 12 ounces. These calories are carbohydrates (unfermented sugars) and partly calories derived from alcohol. Alcohol calories cannot be stored in the body. The calorie value in alcohol should not count as nutritional calories. (Many make that mistake) because the body has to get rid of it. The carbs., however, do count and are essentially the same as grains without the fiber. In other-words beer (in moderation) can help with boosting nutrition and may stimulate the appetite.

Why I know so much about beer is because I have been making my own since 1985.

So much of the literature about helping H/N cancer folks in the past has been about keeping us alive. Treatment regimes of all kinds sought little more that getting the cancer stopped. Few of the early efforts were very good at this and most of the early patients died. Treatment got better, and survivor rates started to climb. Surgeries got more refined, radiation got specific and the chemo chemists got new and better cocktails. Few early treatments paid much direct attention to quality of life - the energy was put on stopping the beast.

Survival rates are WAY up now - and rising. More of us are making it well past treatment and function and quality of life are becoming more and more important. We've got to get past the "make his final days comfortable" thinking and really restore health and function. Nutrition is terribly important in putting the body back together. So many metabolic processes rely upon the vitamins and minerals from a good diet. Healing is 'expensive' in metabolic terms and has to be supported with the raw materials from diet.

Social drinkers, go ahead and drink for comfort but know that every ounce of alcohol requires the body to divert healthy processes to detoxify. Alcohol is anesthesia to all parts of the body in any quantity. Perhaps the question is "Do you want to suspend your body's healing so that you can relax?"

There. That should get us started again.... Tom

While survival rates from some cancer have improved, that is not significantly true for oral cancer. No more people survive it today than did 40 years ago despite the improvements in radiation, chemo, and surgical techniques, this is primarily because it is 66% of the time found as a late stage disease. When it begins to be found at stage 1 and 2 more frequently, you will see the survival rates go up. Cancer this year replaced heart disease as the number one killer of Americans.

And I was never suggesting a fat free diet. Some fats, hopefully mono saturated, are necessary for normal body functions, as Mark has said. I said that diet only composed of empty calories mostly derived from sugars and fats isn't going to give you the building blocks to heal rapidly and well. You could eat 3000 calories a day of Haggen Das and still have malnutrition. If this isn't self evident to everyone, I guess we need to put up a basic nutrition page to give everyone a clear basic understanding of how the body fuels itself and what each type of nutrient brings to the party. And while I usually agree with Mark I am living proof that you can live off of basically nothing but Ensure for over a year on a PEG tube. I don't think we currently have any posters that are completely PEG based, but there are lots of them out there, and they live 100% off of can liquid diet drinks. Realizing that yes-even calories from any source are important parts of those cans, they do fill them up with sugars to make them calorie dense for the volume. But not to the exclusion of the other building blocks of nutrition. In the next 4 months we will be adding new nutrition pages to the main web site written by nutritionist/scientists from Abbot Labs. This issue needs to be stated clearly by someone with better credentials than me. This will certainly be helpful for the minority of people that actually get off these message boards and read the main body of the web site.........

Tom.
I don't know where you get your numbers from but the survival rates for H&N cancer are not significantly changed from 10 years ago. Maybe a few percentage points in our favor. There still isn't an effective chemo protocol and they are still using tried and true "slash & burn" techniques. In fact, we regularly have people here working on the "making their final days comfortable" issues. Not trying to frighten anyone but I've been here long enough to see the death toll up close and personal.

They have improved the QOL issues for many, including myelf, with IMRT and it's highly targeted cousins - but the death rate remains almost the same. Distant mets are still a major threat.

I like to thank the heavy drinkers on the site - they improve my statistical odds of survival.

I have read that anything that irritates the oral mucosa is a threat - beverages too hot or cold, mouth washes containing alcohol, etc.

Brian,

I'm looking forward to the nutrition pages since I know I have more to learn about that. I am not getting all but am getting a large percent of my nutrition off of PEG foods (the prescription kind). They do have protein in them and there are protein powders you can add to the mixture to add more protein--though I haven't done that yet because I kept thinking I'd be off the PEG soon. Truthfully, I think the nutrition from the PEG food is about as good or better than what the average Joe eats in terms of nutritional balance. If I add some fresh juices in every day (starting to do that again, now that breast raidiation is over), it's probably even better.

Nelie

You would be surprised Nellie at how good some fruit and protein powder (whey) and ice smoothies can be. They may be a good addition to your PEG. Ingrid made me some true nasty ones that had tons of vegetables in them (when I was in recovery with a regular blender), but now we have a juicer and we routinely have vegetable juices with as many as 10 different kinds of vegetables in it every week. Still not my favorite thing to drink but way less chunky and full of nutrients that I wouldn't get otherwise.

Prime Rib in the blender-now Julia Child is clinching her teeth , and Emeril is saying"don't forget to add a little good Burgandy.

Brian and Gary - My data comes from the National Cancer Institute. Invasive oral and pharyngeal cancers have shown significant decline in mortality since 1976. This has been a steady and consistant trend. Treatment survival rates for our cancers have risen during the same time period. SEER indicates that these trends are statistically significant on both tables. From an epidemiological standpoint, a national trend showing a 6% decrease in mortality is pretty important.

This year, a Korean research team has potentially tied recurrance of our disease (OSCC) to a particular marker - an enzyme that seems to guard some cancers from radio tx. There is recent and significant refinement in the use of cysplatins in support of radio therapy. These are exciting changes and promise real improvements in the usually grim numbers that surround us here.

To be sure, the battle is not won. Even though newer treatment technologies have increased the probability of surviving the cancer longer, the quality of life issues are just recently gaining real attention.

And, for the thread, I have lived exclusively on Ensure for 2.5 years now. And, aside from this, aside from this, aside from this annoying tic, I am fine!! Tom

Having just returned from a conference at the NCI related to oral cancer, I can tell you your number is not accurate as of last week's discussion. And please remember that while we all quote numbers, whether about alcohol or cancer, definitive numbers related to cancer cannot be had. The SEER numbers are only gathered from a few locations around the US, and then a best guestimate for the rest of the country is extrapolated from them. They are far from absolutes. Since the change is only a percent or two, given the guestimate that SEER numbers actually are, until there is a trend of consequence that can be tracked (there is not), everyone has agreed that the existing numbers are fairly accurate, and that is any decline is insignificant.

There is some data that suggests that HPV oropharyngeal and tonsillar cancers have slightly higher survival rates and are actually distinctly different diseases than the balance of oral cancers. This comes out of the work of Dr. Maura Gillison at Johns Hopkins, also a OCF science advisory board member. The population that they affect is completely different. White, educated, upper middle class, and equally divided by gender. This is very different from the demographics of other oral cancers. The etiology of the disease is also completely different being viral induced vs. conventional tobacco and alcohol carcinogen created. The trend of tobacco decline in the US tracked over the last 10 years, and the remaining constant of oral cancer occurrences remaining stable, would indicate that a new etiology is replacing an old, thus keeping the incidence numbers the same. If HPV 16 is really the growing cause, (and there is published evidence that it has grown as an oral cancer cause by about 3% per year for almost a decade now) and these have a slight survival advantage, then the close to 2% drop we have seen can be accounted for. That is the current thinking of the CDC Oral cancer Work Group which I have a seat on, and the people at the NIH/NIDCR whose senior scientist is an OCF science advisory board member, and that is also an unproven belief hypothesis at NCI.

Regardless of the lack of major improvements in treatment (what you are quoting are not considered major improvements as some institutions have for years done concurrent chemo and radiation, and the published data is just now coming out showing a slight survival advantage, but not in end results), I stand by the fact that until we are finding the disease at early stages when it is more susceptible to the modalities of treatment we have, the death rate will not decline significantly.

Brian,
Well I'll sleep better tonight knowing that I am one of those upper middle class, educated, white, non-smoking and drinking tomsil cancer survivors. Dr. Gillison will be my new patron saint! Does she have any data on recurrence at the original tumor bed or distant mets from tonsil cancer?

All kidding aside - it all makes sense. Very interesting.