I was benefiting from some of the posts of a similar topic which remain nameless especially if posters were lashing out. We do not have enough time for that.

There were a couple of folks who expressed similar issues with eating and I really enjoyed following the discussions and so much wanted to say I too have trouble eating. I can east small bites spoons of yogurt or bit of soft something, but it�s just not enough (3000 cal) so I must use my PEG and push Ensure H-Cal.

John, the trouble I have is the pain in the throat. I was diagnosed with SCC of the tonsil and all during radiation (35 treatments) and 3 rounds cisplatin, I had mouth sores which burned a great deal.

My last rad was 10 Jul and my mouth sores have gone away. Yea. I can take bites but when the food gets to the back of the throat ooh it hurts. It burns. When food passes it stops.

Other problem I have is I cannot take much nutritional drink. It fills me up very quickly. One can per feeding with water is hard to finish. I immediately get the full feeling. I burp gas of the drink. The drink is at the back of my throat. I have choked, coughed, sour stomach makes me sick and I have vomited all which makes it hard to keep food down. I wish I could meet the goal of 3000 cal a day but it ain�t happening, mostly because my body just now cannot take that much volume.
So I invite those familiar with these issues to let me know what they think or how they dealt with a similar issue.

Oh nutrition...my favorite subject. I'm sitting in a Drs appointment at the moment so I'll expand my thoughts when I have a moment.

Are you swallowing the liquid without the PEG?

Finishing rad only 3 weeks ago is too early to expect much in the way of improvement. Heck most people don't even start to begin the recovery period until about 3 weeks post Tx. Your recovery time can last every bit of 2 years so don't get frustrated if you aren't getting better as fast as you want.

I didn't have a PEG but it was 3 weeks post Tx for me before I even tried "solid" foods and they consisted of things like mash potatoes with tons of gravy, fuit cocktail, mac n cheese, etc. Little, tiny tiny bites at first. What really saved the day was Carnation Instant Breakfast (now Boost) VHC with it's 560 calories per 8 oz can.

To emphasize the importance of nutrition, over 20% of all cancer patients die of malnutrition, not the cancer or treatment of. My guess is that that figure is most certainly higher in Oral Cancer patients due to the nature of our disease and the difficulty of delivering said nutrition. Due to the bodies natural response to both the cancer and the stress associated with the cancer experience your body is already not absorbing nutrients the way it should and is being put into a hyper metabolic state trying to heal itself from the effects of treatment. This creates a dangerous situation and usually leads to cachexia, or cancer related wasting syndrome where the body begins to catabolize it's lean muscle mass into energy and amino acids to throw at the immune response.

The hormones that trigger the immune response in the body also have the unfortunate side effect of reducing digestion and absorption, in addition the bodies cortisol levels become elevated (the hormone the body produces as a reaction to stress) furthering digestion/absorption issues as it counteracts insulin which is important in the metabolism of carbohydrates and fats for energy. To add to the problem, most of the medications that are prescribed to the cancer patient also constrain testosterone levels (opiates, anti-depressants etc) which is important in maintaining lean muscle mass and protein synthesis in the body.

So, the question is what steps can we take to give ourselves the best chance at surviving treatment and the effects of cancer? The few things we can control and the most important really after choosing our medical professionals is our attitude and our nutrition.

There are few ways outside of the harsh drugs used to treat Cushings Syndrome to control Cortisol in the body, however the ways to do it are easy stress management techniques. Stretching (I love Yoga or Tai Chi), walks, music, deep breathing, prayer, meditation, reading, movies etc. Your bodies cortisol is highest in the morning, lowering it then helps control it throughout the day so do something before you start the day to relax and lower your cortisol.

Limit your caffeine intake as well as it boosts cortisol, and can hinder sleep patterns, an issue you'll have also due to opiates (insomnia is a common side effect of opiate pain meds)...getting around 9hours of solid sleep reduces cortisol. Nutritionally Omega 3 fatty acids have been shown to reduce cortisol, which leads me to nutrition...a favorite subject of mine.

Now most of the Dr's and people on these forums will recommend liquid meal replacements like Ensure Plus or Boost (Carnation VHC is now Boost VHC) and they'll recommend 2500-5000 calories of whatever you can get down to help maintain weight, and in many cases this is actually part of the problem due to what these meal replacements are made of.

All of these meal replacements use corn syrup, and oil (canola, corn & soy) to deliver their calories, soy protein for protein, and then chalk them full of isolate vitamins and minerals, which are more difficult for the body to absorb. The issues with this are many so I'll explain in detail with the hopes of it making sense. Due to elevated cortisol levels and their effect on insulin, it's important to control blood sugar levels, which means limiting simple sugars and starches. Soy protein is one of the slowest proteins for uptake making it a poor choice for top level athletes and cancer patients alike due to their systems need for quick absorbing proteins. Lastly the oils used to increase calories in a mixture of Canola, Corn and Soy.

Now I'm a fan of getting your calories from fat (higher percentage of fat in the diet ups testosterone in the body that helps maintain and build muscle) but understand this is also a contributing factor for nausea as high fat diets actually cause nausea. Oils are a great way to add calories too and Canola is considered the healthiest due to it's the highest in unsaturated fat, however it's lower in monounsaturated fat then Olive Oil. My big issue here is that these are all Omega 6 fatty acids without the balance of Omega 3's which still leads to insulin resistance and metabolic syndrome, which your body is already experiencing due to the cancer experience as described above. It's estimated that western culture's diet now has a disproportionate ratio of Omega6/Omega3 by 20-30/1 where our ancestors were about 1/1, to 2/1.

Ketogenic Diets, or high protein diets have had success treating insulin resistance and "trick" the body into using fat as energy (both stored fat and fatty acids) by breaking them down to keytones. High protein diets though are usually are very high in saturated fats (bad) and puts an added strain on the kidneys, which when going through cancer treatments are already strained due to chemo, opiates and other drugs.

Where I haven't seen a study on this, I believe from my research that using a Ketogenic Diet focusing on high fat (poly and mono unsaturated fats with a balance of Omega6/Omega3 fatty acids of no more then 6/1, preferably lower), fast uptake protein (whey is the fastest) ,plenty of fresh fruits and vegetables(studies show organic fruits and veggies contain higher concentrations of vitamins and minerals, unlike isolates these are easily absorbed by the body), and coupled with relaxation techniques that help lower cortisol would significantly improve survival rates and how patients stand up to the brutal treatments we have to endure.

My thoughts are to use a liquid/blenderized diet high in good fats as described above, fast uptake whey protein and juiced fruits and vegetables divided into 6 "meals" per day to stabilize blood sugars and counteract the metabolic syndrome patients experience to increase survival rates simply by making sure they have the proper nutrients their body needs to maintain lean muscle mass.

Personally if I were in treatment I would use something like this:

1 scoop Cytosport 100% Whey Protein (Chocolate or Vanilla, 140 calories, 27g protein, 2.5g fat, 3g carbs)

1Table spoons Olive Oil (120 calories, 14g fat)

1/3 cup coconut milk (Thai Kitchen, 140 calories, 14g fat, 3g carbs, 1g protein)

1/2 cup juiced spinach, apple, carrot, strawberries, blueberries (around 60 calories, 15 carbs)

1/4 cup walnuts (180 calories, 17g fat, 5g carbs, 4g protein)

2 tablespoons flaxmeal (60 calories, 4.5g fat, 4g carbs, 3g protein)

water to consistency and puree the bejeezus out of it.

Calories: 745
Fat: 52g
Protein: 35g
Carbs: 30

This is about a 60%, 20%, 20% breakdown of macronutrients getting the majority of calories through fat with quick absorbing protein, high in easily digestible vitamins/minerals/antioxidants and an OK ratio of Omega 3 to Omega 6. The coconut milk is a medium chain triglyceride that will help with energy levels and all of the fats are low in saturated fats and high in mono and polyunsaturated fats.

For the record, my current diet is a lot like this only higher in protein, I'm on an all liquid diet and have been for quite sometime. Those that have met me in person can attest to my physique, I'm built like a truck and have put on and kept good muscle mass despite my challenges eating.

Hope that helps, good luck.

Eric

Thanks for posting your nutrition advice, Eric. It looks like you have been doing alot of work on this subject.

Please make sure anyone considering the above to be in touch with your physician before undertaking any diet changes. Especially if you are taking medications, check for interactions. Herbs can cause unwanted reactions with some medications so be safe and check before taking anything new.

Here is a list of easy to eat foods. They are softer and usually have a smoother texture which makes eating them easier. Im another person who eats yogurt. I eat 3 or 4 of them a day. I usually eat oatmeal or cream of wheat too. Its very hard for people with eating issues to take in enough calories unless they drink the ensures or similar formulas (in my opinion they taste awful). I also try to eat mashed up cottage cheese every day since its high in protein.
Easy to Eat Foods List

Eric and Christine, you guys are great and thanks for contributing to this ooh so important topic.

What do you guys think about the low volume I can tolerate? It seems if I push or swallow 10 oz of liquid, I feel like I am full to the brim and its at the top of my throat!

May it be my stomach has shrunk so much that I cannot take more volume?

I am a 6 foot formerly 195 lbs guy. I have lost weight since April and I am now at 163.5 lbs.

Ken

Eric, is that receipe for one meal or 6 meals?

Thxs,

Liquids tend to feel like they are very heavy in your stomach. The formula can really make you feel full. I would check with your doc and ask them to get a nutritionist involved to help you. Have you had a swallow test done? This will make sure you can physically eat and drink without it going into your lungs. A nutritionist will also be able to help you with why you feel full so quickly.

I kinda think you are right, after going thru oral cancer that a persons stomach must shrink. Before cancer I would be able to eat a big meal, now forget it. I will be starving and at the most I will be able to eat 2 cups of food. Thats pushing myself to eat a few more bites too. I usually only eat around a cup at a time which is why Im always starving. The cup of yogurt is the perfect sized small meal for me. I could eat 2 of them and that would be enough but then an hour later Im hungry again.

Ken, the above recipe is for one meal that you can eat 6x daily, think of it as a healthier replacement for your Ensure or Boost. Don't eat till you are stuffed, just consume whatever you can keep down each time my friend.

The above advice is the basis of a grant project I'm working on actually. The thoughts above are the unrefined results of a collaboration with experts in the field of sports nutrition and training as I have a long history and many connections there, several with the initials PHD after their name.

Now it's a little known fact that our Medical Practitioners know very little about nutrition, in fact if pressed they will have to admit how little was covered during their education to become medical Dr's, so it's a rarity that you'll find an MD that is up to speed on anything pertaining to exercise and nutrition, especially in extreme cases. Sadly our nutrition experts are kind of in the same boat.

Understand that requirements vary by state. According to the Bureau of Labor Statistics, a dietitian and a nutritionist needs at least a bachelor's degree in dietetics, foods and nutrition, food service systems management, or related areas.
35 states require licensure. Twelve states require statutory certification, and one state requires registration. For information on registration requirements, check the Commission on Dietetic Registration website, or check your state's government website.

Now if you read that, you can have a "nutritionist" that received a Bachelors degree (2 years of required classes and 2 years of study that pertain to their trade) in "food service systems management" that may or may not be required to pass a certifications test to give you the advice that may or may not save your life. So the advice to get the "best" medical advice available to you also would include nutrition advice.

Now if you look at the metabolic conditions, nutritional and recovery needs of a cancer patient, they are very similar to those of athletes, especially those that have to restrict their diets to keep or cut weight, like boxers, wrestlers, bodybuilders, mma fighters etc. Near the time they have to compete most of these type of athletes are on a very restrictive diet with their nutrition aimed at retaining lean muscle mass, while squeezing all water and adipose tissue they can out of their systems. So my advice is to get the advice of a nutritionist that is familiar with working with those types of athletes...which is what I'm doing actually in this grant proposal.

I'll be updating my research on these forums and most assuredly making adjustments etc, but this is a good starting point.

again, good luck, hope it helps.

Eric

Ken,
After finishing chemo and radiation I too struggled to get enough calories. Eating was painful, tasteless and difficult by mouth for quite some time after treatment. I found myself trying to eat as much as I could by mouth to get it used to having food pass through it again. It was about 6 months before I could get enough by mouth to even think about not using the PEG anymore. It's a slow process but one you need to take slowly. Give your body the time it needs to recover before getting too worried about getting off your PEG. I wanted off right away as well and I now know I was just putting myself into a state of malnutrition because I couldn't eat enough good foods by mouth. I did start doing stupid things like just adding empty calories to try and hit the target number. I think I would have had a better recovery had I been more concerned with good nutrition and not just on counting calories.
When it comes to nutrition though, listen to EricS. He has thought me a lot about nutrition just in the short time that I have had the privaledges to know him.