I'm helping Brian and OCF by researching and writing about after treatment issues. The first topic I'm writing about is anorexia as a complication of chemo and/or radiation. I'd appreciate any counsel or observations anyone might have that I could include in my write-up, particularly regarding what might have helped you or a loved one deal with anorexia. Thank you so much.

John

Hi John:

My input about anorexia as an after affect from tx is very limited. My understanding of anorexia is that it affects people by making them have a very poor self image and thinking they are fat. They also diet excessively to stay very thin and fear weight gain. This is something that puzzles me since oral cancer survivors struggle so much with eating and maintaining balanced nutrition. This is not something that is deliberatly done to stay thin as in an anorexic person.

Oral cancer patients would love to eat normally but from surgery, radiation with or without chemo, it has ruined our ability to eat normally. This is taking away one of the most basic human instincts which mentally is very painful. Eating becomes work due to the pain, lack of taste, fatigue, excess mucous, dry mouth, throat constictures, sensitized tongue, open sores, trismus, loose teeth, newly created tongue or even a surgically removed tongue. Its not for lack of wanting to eat or trying to be thin that would cause an oral cancer patient to be considered anorexic. Please correct me if Im off target and misunderstand your post.

There are several other after effects which I struggle with on a daily basis. I can probably be of assistance with other after effect topics.

Seems to me that cancer treatment might be an anorexics dream world!

All one has to do is slack off a little on the chore of getting the daily nutrition and the scale springs start to stretch less!

I just had my driver's license renewed and realized that I should have changed my weight on the new one -- Five years ago, I was 180 pounds and today I am slightly less than 130...

I had involuntary anorexia during Tx.

Hi, John,
My hubby is post treatment two weeks and has what you call "anorexia"...it is just a lack of appetite because there is no taste, per se or very little. I am constantly reminding him to add more cans of Nutrin into his feeding tube (he will not allow me to do so) and encourage him to drink milk and broth. He can tolerate thin cream of wheat(made with 1 1/2 cups of whole milk) and more milk added as it thickens while sitting.) His oncologist said this is a good choice for him to eat as it has a lot of zinc in it, which is good for healing. He was encouraged to try and get 2800-3000 calories/day but at this point, can only tolerate 2000 maximum (it makes him sick to the stomach when he gets more.) I think that you are assuming that this condition is called anorexia because some of the cancer information literature talks about anorexia and cachexia(mustle wasting)but this does not neccessarily apply to Head and Neck Cancer...the recovery options are so much more difficult than for other survivors...just ask someone who has had prostrate or breast cancer. They will tell you that they ate to get better. It is all a struggle. Hope this helps Brian.
Dee S.

Donna, during my recovery from the radiation, I could take the liquid nutrition as fast as I could gravity feed it into my PEG.

However, during recovery from my first free flap surgery, the food was going through me very fast; I would get the sweats, some stomach pain and then the runs -- Per advice of nutritionist and folks here on the forum, I acquired a food pump and set it to deliver food at a very low speed (20 ml/hr), which worked quite well -- I could even set it to run while I was sleeping to catch up on the calories -- I used Nutren 2.0 (500 cal/can).

Now in my current recovery, I can again take in the food at fairly high rates (250 ml/hour; or a can per hour) with no problems.

David, I like "Involuntary Anorexia"!

Thank you for your insights, Christine. And you're right; cancer-related anorexia is very different from the anorexia exhibited by people who are obsessed with their weight. The anorexia I am writing about is the result of treatment for oral cancer. I can only imagine how frustrating it must be for an oral cancer patient who struggles so mightily to get enough nutrition, only to know that there are others who don't have to deal with the treatment-related challenges you do and yet still fail to eat properly. Of course, that is not to say that anorexia suffered by weight-obsessed people is not a serious disorder in its own right.

Thank you again. I look forward to gaining other insights from you on future topics. In the meantime, my thoughts and prayers will be with you.

Thanks so much for your reply, Donna. I will be sure to add your tip about cream of wheat to my article.

From the research I have done so far, it is my understanding that oral cancer patients (as well as patients suffering from other types of cancer) can suffer from both anorexia and cachexia, and that anorexia is sometimes a symptom of cachexia. And I certainly understand your point about it being much more difficult for oral cancer patients to overcome their anorexia than it is for other cancer patients.

It seems clear that your husband is very fortunate to have you looking out for him. My thoughts and prayers are with both of you.

Pete:

Thanks for the tip about the food pump, which I'll definitely add to the article.

Best wishes in your recovery.

David:

120 miles a week--Wow! Keep on bikin'!!!

So John you are actually writing an article about the difficulty that oral cancer patients have in returning to a normal weight? I, like Christine took the meaning of anorexia at it's usual meaning of people who take laxatives, diet pills and consider themselves fat usually due to low self esteem.

I am currently trying very hard to get back within my normal weight of 105 lbs. When I was released from the hospital in
Oct 08 I weighed 96 lbs. When I began treatment in August 08 prior to surgery I weighed 125. Right now I weigh 99 lbs and have since Dec. I take in 5 cans a day of the Jevity 1.5 which has 355 cals per can, I drink milk shakes, nutrition shakes, David's beloved Carnation VHC and add Benecalorie (330 cal ea.) to shakes and soups. I can't get up over the 99 lb mark yet. But I am not a couch potato either. I walk a little each morning and take care of myself, my pets and home since I live alone. My next option is to get the pump like Pete and put the calories in overnight and then add to them during the day since my body fat percentage keeps going down and I have no reserves to fall back on. These are all difficulties that I never thought I would face since in mid life.

Patty

Overall, I lost 65 pounds from having OC. Without the help of a feeding machine and the PEG tube, it would have been much worse. At 20 months post OC diagnosis, I can happily say my weight is stable. I havent gained back what I lost, but I am able to maintain a normal weight. It does still take alot of work and planning to consume a balanced diet on a regular basis.


Patty, I used the feeding machine overnight for about 6 months. Its something that would be very helpful to you. I have several tricks that I can share with you if you need any assistance with it.

[quote=John Pohl]Pete:

Thanks for the tip about the food pump, which I'll definitely add to the article.[/quote]

To give credit where credit is due, it was the food supply nutritionist (from Walgreen's Options Care) who suggested the very slow pump rate and ChristineB who had so many suggestions for using it while sleeping, diluting with water, etc.

What a frustration, starving but too nauseous from chemo and morphine to keep anything down, mouth too painful from surgery and radiation to actually eat.
The liquid supplements not being complete sources of nutrition. Finally the time needed to actually eat a meal becomes a problem; just try to get your co-workers, friends or family to spend an hour or 2 waiting for you to eat.
As I chose not to have a PEG, I had a very hard time keeping the pounds on, that may have been a poor choice to make.
One thing I did notice was that even as I put in LOTS of volume and I did keep it down, I was still craving odd things. As a result I did a detailed nutritional study and discovered some problems. The blender and bottles of baby food helped fill in the gap in the nutrients.
I wonder if properly blendered and watered down real foods, targeted at the nutrients missed by the liquid supplements could be put through a PEG??
Luckier than some here, I can fight and maintain 180 pounds, some 30 pounds less than before, fed by mouth, however I never keep up on work days.

Keep up the good work!

UncleVern

Donna and all others trying to get a lot of calories down that throat,


Get Carnation Instant Breakfast VHC. 560 cals in that small 8 oz can. Only 6 cans a day and your over the 3000 benchmark.

John,

That's only during my biking season which isn't Tax season so from January until the middle of April I store fat for the next season and then it takes me about a month or so to get back up to those miles each week.

John
[quote]The eating disorder known as anorexia nervosa is commonly described as "self-starvation. - Public Health Encylclopedia [/quote]
Like David, I had "involuntary anorexia" caused by radiation and chemo complications. I was going to join in the chorus of disbelief that wanting to eat, trying to eat, and being hampered by physical pain and surgical changes could possibly be lumped together with "fashion model disease" Yet I see from Wikipedia that indeed cancer caused eating problems have now become part of this Anorexia: Wikipedia [quote] Anorexia is common in cancer patients with reported incidence between 15% and 40%. Primary anorexia is especially prevalent in patients with advanced malignancy, and is frequently a side effect of cancer treatments.[/quote]
As Brian constantly cautions us, unregulated web sites and even mainstream web sites often have major errors and outdated statistics on oral cancer stuff. So Please share with us your findings or have Brian post your article in the OCF reader.
PS. I got by on a diet of Ensure Plus and used Selzter water to swish and spit out the mucous and pain pills to swallow. So my remedy was :"Self-forced feeding"

Hi John,

When I lost the ability to take in food orally, I had to rely more on my Gtube and Jevity 1.5 Cal cans. I thought the Jevity would surely be the answer to maintaining weight, but I had serious issues with osmotic diarrhea when I first attempted to put a can in. I did not want to be stuck on a pump at night or in the day, so I ended up taking about three days and training my body to accept the gravity feeds and increase tolerance.

For those of you who have had this issue and would like to attempt to remain pump-free...let me explain. The first day of trying Jevity by gravity, I put in 50ml of Jevity and 100 ml of H20 every 2hours starting at 7am until 9am. Then at 11am, 1pm, and 3pm, I added 75 ml Jevity and 150 ml H20. At 5pm, 8pm, and 10pm, I then put in 100 ml Jevity and 200 ml H20. If during any of this I got diarrhea again, I went to the previous dose increment and continued that for a few more hours until I felt ready to try an increase. For Day 2, I did 100 ml Jevity and 200ml H20 at 7am and 10am. If all went well, then I increased to 150 ml Jevity and 250 ml H20 every three hours for the rest of the day. On Day 3, I began with 150 ml Jevity and 250 to 300 ml of H20 at 7am and 10am. Then three hours later I attempted 200 ml of Jevity and 400ml H20. When it was clear I tolerated that, I graduated to putting all 237 ml of Jevity in at a time with 2x the amount of water. I'm sure I could have gotten away with less water, but I was very afraid to encounter osmotic diarrhea again so almost always used the 1:2 ratio of Jevity:H20 from here on out. By day four, I was able to get my 5 cans of Jevity in with 5 feedings. Each feeding took about 20 to 30 minutes (usually water flew in and Jevity took it's time with gravity).

I'm not sure if people have tried that but it really did work wonders for me and it felt good to be as mobile as possible (though honestly, I was on the couch most of the day anyways).

I am now 6 weeks out of treatment and am trying to eat as much orally as possible. I'm not longer dependent on my feeding tube, however, my diet is limited mostly to waffles, french toast, syrup, eggs, and pasta alfredo (mild soft things that don't burn my tongue or that I can coat in syrup to smooth the texture). I realize that this is not the most well rounded of diets so I'm gradually trying to find foods that incorporate vegetables too. Fruit is off the table for now because too acidic and burns like hell. I've found that quiche made with spinach works alright. And I have just started adding really dead broccoli to my pasta alfredo. I was 140 pounds before surgery, radiation, chemo and erbitux. I'm now 120 but staying constant here and trying to gain weight (ideally, not just from waffles and syrup).

I used to be an avid runner but cannot run with Gtube in place, so I've started biking to regain strength (i'm hoping to add weight with muscle mass too ). I've been biking now 30min to 1hr a day on my trainer to regain energy, strength, and appetite. I find that I'm more willing to put up with the pain of eating (with magic mouthwash) when I have a good appetite as opposed to eating just to get by. And biking seems to do this for me. Now if only I could talk! (tongue hurts too much to talk...)

Ok, I've written a novella. I hope this helps!

Kristen

Cachexia is what happens to late stage cancer patients who cannot eat. I don't know if that is the right term. I sure felt like I looked anorexic at teh end of my treatment and while Iw as transitioning to solid food again. I have ot be careful when I get busy/stressed that I take enough time to eat otherwise I lose weight.

The loss of appetite taste and eating function and the difficulty in getting these all back are what causes the weight loss. Anorexia is when someone deliberately starves themselves to lose weight.

[quote]Anorexia is when someone deliberately starves themselves to lose weight[/quote]

Common misunderstanding, which I also shared -- The above is anorexia nervosa, not plain anorexia, which is "loss of appetite especially when prolonged", according to Merriam-Webster

http://www.merriam-webster.com/dictionary/anorexia

Kristen,

I think you are doing great so keep up the good work. Push but don't push to far. If you can't "enjoy" and I use that word very loosely, something today, wait a few months and try it again. Over time and I mean maybe 2 years you should be back to near pre Tx norms.

Thank you, David. I'd really love to get back to school, but I need to be able to talk for that. I'm learning to be more patient though. Trying to keep my mind and body sharp in the mean time!

Come South and I'll teach you how to prepare tax returns for a few months.

Well,

I finished tx 11-4-2008, I don't view myself as anorexic; although, it becomes hard to eat and then I became really use to the liquid diet and I find myself forcing myself to eat. Because, eating as usual has dramatically changed from the norm. I have added soups to my diet of VHC and supplements.

I never had the PEG...But I assume others have become dependent on it...That was one of my concerns.

I don't think I would say I am dependent on my PEG (well I am to get my total nutrition), but I find myself using it instead of going to the trouble and the mess of trying to eat. I'm not sure how to deal with this - I keep hoping that the post tx side effects will lessen and eating will be more enjoyable again. Then there is that time factor too - it takes me so long to eat the smallest amounts and if I'm really hungry, the PEG is faster.

Patty

Anorexia is different from anorexia nervosa. I see many people here making that mistake. Anorexia Nervosa is a condition associated with poor body self image and what we typically think of when we hear the term "anorexic."

Technically, anorexia just means a loss of appetite. Do I ever have a case of anorexia!

I started out at 226 pounds (5 ft. 6 female) when I was diagnosed in March 2007. I had a hemiglossectomy followed by chemo and radiation. I had a peg tube placed in June 2007. I don't think, even with the peg in, that I EVER kept any nutrition inside of me - I vomited constantly. My weight plummeted and has continued to decline even 18 months after treatment.

I now weigh 114 pounds on a good day and am nothing but skin and bones. I've lost 50% of my body weight in less than 18 months. A person with anorexia nervosa might not be able to see how thin he/she is - wow - do I ever see how skinny I am and I really hate my appearance. I'm only 38, but starting to look far older than my years because there is no fat in my face.

I struggle every day to have an interest in food. I can smell food and think to myself "that smells good," but my body doesn't want to eat it. I put food in, but any more than about 300 calories at a sitting and I'm so stuffed that I feel ill. Food is uncomfortable in my mouth - so maybe a pain stimulus is part of what keeps me from wanting to eat. There is literally not a single food out there that I ever crave or desire in any way. There are foods that aren't as painful and not as difficult to eat - so I eat those because I must.

My thyroid is starting to fail (TSH levels are climbing), but I'm only considered to be in subclinical hypothyroidism. I'm wondering if my thyroid function is what is compounding my weight issues (even though typically in hypothyroidism one gains weight and doesn't lose it easily, a lack of appetite is a listed symptom).

If I had all of the functioning parts required internally in my mouth to be able to chew, swallow and eat I would be a very very happy person again.

Some of us don't have a choice anymore and we struggle with weight loss because we just don't have the "complete package" in our mouth required to swallow and eat like the majority of other people.

We can only work with what we have now and it can be extremely difficult and frustrating.

Karen

As I remarked elsewhere, I am starting to have some food cravings and I am nowhere near being able to swallow anything. I just hope that when I am able to start eating again, that I will have enough functional taste buds to have food taste good.

I don't think there's much of a problem with PEG dependency because that's just a willpower problem; the real PEG problem, for those who may have a choice, like during radiation, is not knowing about or dealing with things like trismus and swallowing. I would recommend to anyone that they get the PEG, maintain it by flushing with water, and just taping it out of the way as a backup -- Having it doesn't mean one has to use it, but not having it means one has fewer choices.

Even now, I have to constantly remember to do some jaw stretching to keep trismus at bay.

Eating with damaged food-processing equipment is hard work and it may be quite difficult to ingest a sufficient number of calories daily to keep one's weight up and support the healing process. During and post radiation, I kept the swallowing exercised by taking my meds by mouth and also my hydration -- I used the PEG almost primarily for food.

My husbands anorexia was pretty bad and the doctor finally put him on Reglan. Which helped with gastro problems and increased his desire to eat. It took several weeks for improvement and the drug can cause other problems so it is important to monitor it.

He is gaining weight now that we have passed the one year anniversary.

I wish I could be of more help, but the only time I really had any desires to not eat was when I was switching from the feeding tube back to oral eating. That was because I was on a continuous feed with the feeding tube and when I would try to take in the drinks by mouth, I would get super full super fast and feel awful after. It was pretty frustrating. But once I got over those issues I was all about food and am constantly eating (and still losing weight I might add).

It's actually difficult to get about 2,000 calories of nutrition in (without eating a lot of the bad fats and other heart-unfriendly foods) on a daily basis.

I believe I read recently that it takes cutting out about 500 cal/day to lose weight at a rate of about two pounds per week -- I presume the opposite is true, so if a typical diet is 2,000 cal/day, one needs to increase that by 25% to gain two pounds/week.

Ha! Found it in a newsletter from my ins co:

"2. Adjust your eating and exercise habits.

On average, Americans consume 2,000 to 2,500 calories per day. To lose 1 or 2 pounds a week, you'll need to burn 500 to 1,000 calories more than you eat each day. Your doctor or a dietitian can tell you how to do this. It typically involves lowering your calorie intake and increasing your physical activity. The goal is to make lifestyle changes that can work for you the rest of your life."

Thank you for sharing your experiences with me, Patty. I hope you're able to get back to your normal weight soon.

Best wishes,

John

Thanks, Uncle Vern, particularly for your thoughts about the PEG.

Best wishes,

John

Thanks for the helpful feedback. And I agree that it's unfortunate that "anorexia" can be a very misleading term when applied to oral cancer patients.

Best regards,

John

Wow! I sure learned a lot from your posting, Kristen. Thank you so much!

Best wishes,

John

Thanks for the helpful feedback!

Best wishes,

John

Well said, Pete. Thanks!

John

HERE'S MY FIRST DRAFT OF THE ARTICLE ON ANOREXIA. THANKS TO EVERYONE WHOSE HELPFUL INSIGHTS ARE REFLECTED IN THIS ARTICLE. I'D APPRECIATE COMMENTS ABOUT ANYTHING I MIGHT HAVE GOTTEN WRONG OR OMITTED FROM THIS. THANKS AGAIN! JOHN

Introduction

One of the possible complications of both chemotherapy and radiation therapy is anorexia, which is generally defined as �the loss of the desire to eat.� Anorexia can be both a cause and a symptom of weight loss, which occurs to at least some extent with 72% of head and neck cancer patients.
It is important to note that anorexia caused by cancer treatment is very different from anorexia nervosa, which is the type of anorexia that most people are familiar with. Anorexia nervosa is a very serious condition in which someone deliberately--and often irrationally--starves themselves in order to lose weight. In contrast, the anorexia endured by cancer patients is anything but voluntary.
It is crucial that cancer patients minimize their weight loss, which can not only impair the body�s ability to survive the tumor per se, but also delay the initiation and/or completion of aggressive anti-tumor therapy. One study demonstrated that 54% of patients entered into Eastern Cooperative Oncology Group chemotherapy trials experienced weight loss that significantly affected their survival rates. While anorexia is not the only possible cause of weight loss, it is important to deal with this condition as soon as it arises in order to prevent an exacerbation of the weight loss.
Before discussing anorexia as a possible complication of cancer treatment, there are three important points that should be made about this condition.

In some cases, anorexia may exist in conjunction with--or even be caused by--a condition called cachexia, which is a clinical wasting syndrome evidenced by weakness and a marked (up to 80%) and progressive loss of body fat and muscle tissue. In contrast, weight loss associated with anorexia generally does not result in a loss of lean body mass. Cachexia, together with anemia (a frequent condition in cancer patients), can limit physical activity and consequently inhibit protein synthesis. Another dangerous aspect of cachexia is that, unlike with starvation, the body�s energy expenditure increases even when caloric consumption decreases. Anorexia and cachexia normally require different treatment: dietary changes through nutritional counseling in the case of anorexia, and drug therapy in the case of cachexia. (While drug therapy can also be indicated to treat anorexia, it generally involves different drugs than are indicated for treating cachexia.) In any case, it may be for a person suffering from anorexia to speak to their doctor to see if they are also suffering from cachexia, particularly if an increase in calorie consumption does not succeed in slowing wasting or lean body mass loss. (Note: Other symptoms of cachexia beyond anorexia include early satiety, fatigue, generalized weakness and decreased function.)

In addition to being a possible complication of chemotherapy and radiation therapy, anorexia combined with marked weight loss can also indicate the presence of a cancerous tumor. Furthermore, in many cancer patients, particularly those with pancreatic or lung cancer, resting energy expenditure is not suppressed by progressive weight loss and can even be increased, thus exacerbating the detrimental effects of wasting and reduced food intake on nutritional status.
Sometimes anorexia may be diagnosed when reduced energy intake is observed, but this could be misleading because the reduction of ingested calories might be the consequence of dysphagia (difficulty in swallowing) or depression rather than anorexia.

(Sources: Nature Clinical Practice Oncology; article by Ann Berger, RN, MSN, MD in Cancer Control: Journal of the Moffitt Cancer Center)

Cancer therapy or the cancer itself may cause changes in your body chemistry that result in anorexia. Pain, nausea, vomiting, diarrhea or a sore or dry mouth may make eating difficult and cause loss of interest in food. It is also common to lose your appetite because of anxiety or depression about your disease. Loss of appetite is usually followed by an undesirable loss of weight by taking in an insufficient amount of calories every day.

The reduction of caloric intake can lead to a loss of muscle mass and strength and other complications by causing:
-Interruptions of medical therapy, impeding effective cancer therapy
-Poor tolerance of surgery
-Impaired efficacy of chemotherapy and radiotherapy
-Decrease in quality of life
-Decrease in immunity

A totally different approach to eating is required when you no longer have an appetite to nourish you. You will need to learn to eat even when you do not feel like it, and to think of eating as an important part of your therapy. Talk to a dietitian, nurse or your doctor about ways to improve your appetite. It is important for your general sense of well-being and your ability to fight the diseases that you eat a nutritious diet and try to maintain your weight.

Since appetite may no longer motivate you to eat well, you will now need a planned approach to ensure that you ingest enough calories and avoid losing weight.

(Source: cancersupportivecare.com)

The balance of this page will now focus on anorexia as a complication of treatment, and how best to deal with it.

Consequences of Anorexia
Adequate nutrition is essential for the body to fight cancer. It can strengthen the immune system and help increase the effectiveness of cancer therapy as well as your body�s tolerance to therapy. Simply put, a well-nourished body is stronger, more resilient and quicker to recover than a poorly nourished one.

There are two main goals for a cancer diet:
-Achieve and maintain a reasonable weight.
-Prevent or correct poor nutrition.

Care for Anorexia

Here are some suggestions for dealing with anorexia, although your doctor should certainly be consulted on this matter.

Options for Making It Easier to Eat
-Eat healthy, energy-dense foods (nutrient-rich foods that are relatively high in calories-per-ounce but not overly high in fat). Examples include peanut butter, legumes, low-fat cheese and other dairy products, poultry, protein bars, �instant breakfasts�, and green, starchy vegetables.
-Eat cream of wheat with 1 1/2 cups of whole milk; add more milk as it thickens while sitting. Cream of wheat has the additional advantage of containing zinc, which can promote healing.
-Avoid high-fat food, because fat delays gastric emptying and may exacerbate early satiety (i.e., feeling full), a symptom of anorexia.
-Aromas may also help stimulate the appetite, such as freshly baked bread (preferably whole wheat).
-A glass of wine or beer prior to meals may stimulate the appetite (but check with your doctor first about drinking alcohol).
-Keep up your interest in food by constantly trying new ones. -Avoid foods that do not interest you.
-Eat with family and friends rather than alone.
-Atmosphere does make a difference; an attractively set table can help take your mind off a poor appetite.
-Give food a second chance; food that sounds unappealing today may sound good tomorrow.
-Stay away from raw eggs and raw meats.
-Take advantage of a good appetite. Eat when you feel hungry; do not wait for mealtime if you�re hungry now.
-Avoid stomach irritants such as aspirin or ibuprofen if possible. When you do take pain medications, do so 30-60 minutes before eating.
-Avoid excessive caffeine and other stimulants.
-Vary the odors and flavors of foods.
-Rinse your mouth before and after eating. Seltzer water may be a good rinse, particularly to help remove mucous.
-Try increasing the use of seasonings, or acid-rich foods like lemons, pickles or olives.
-Try softer foods, such as milkshakes and fruit smoothies, if chewing is difficult.
-Eat foods like pancakes or waffles that can be coated in syrup (or pasta with an alfredo sauce), which softens the texture of the food and minimizes the irritation as the food is chewed and swallowed. Ideally, where possible enhance the nutrition of these foods (such as adding steamed broccoli to the pasta).
-Make sure your teeth or dentures are in good condition.
-Change the form of a food, like mixing fruit or granola into a milkshake or yogurt.
-Eat more frequent, smaller meals. Put these mini-meals on your schedule.
-If food tastes like metal, eat with plastic forks or spoons, or use a glass pot for cooking.
-Use smaller plates so you don�t feel overwhelmed.
-Drink plenty of liquids, but don�t fill up on them prior to eating.
-Keep snacks readily available; take snacks with you when you go out.
-Drink calorie beverages even when you don't feel like eating.
-Rest before eating.
-Try to eat something at bedtime.
-Get some HYPERLINK "http://www.freemd.com/mens-health/prevention-exercise.htm" exercise every day; it could stimulate your appetite. At a minimum, schedule a short walk each day.
-Keep a daily log of your weight. If you lose weight, let your doctor know.
-Don't smoke. Nicotine can suppress the appetite.

Options When Eating Is Difficult or Impossible
(Note: Also see �Supplemental Methods for Getting Nutrition� below.)
-Use liquid meal replacements such as "instant breakfast" when it is hard to eat. Many patients report good results with Carnation Instant Breakfast VHC, which contains 560 calories in a small 8 oz can. Only 6 cans a day will add up to 3,360 calories, which is a good benchmark for patients needing to gain weight.
-Others add Benecalorie (330 calories each) to shakes and soups.
-If you are having trouble keeping food down, you might try using a food pump and set it to deliver food at a very low speed (20 ml/hr). It can even be set to run while you are sleeping to get additional calories. One brand of food to use with a food pump is Nutren 2.0 (500 cal/can). Some patients report that the food supply nutritionists at Walgreen�s OptionCare can provide helpful counsel regarding the use of food pumps.
-Patients who would rather not use a food pump report good results feeding through a tube using Jevity 1.5, which has 355 calories per can. (Jevity is made by Abbott Labs.) This is a �calorically dense liquid food with a patented fiber blend that provides complete, balanced nutrition.�

Note: For some patients, keeping food down--even when using a feeding tube--can be a challenge. While the situation is different for each patient, here is the trial-and-error approach reported by one patient:
�On Day 1 of trying Jevity by gravity, I put in 50 ml of Jevity and 100 ml of water starting at 7 am and 9 am. Then at 11 am, 1 pm, and 3 pm, I added 75 ml Jevity and 150 ml water. At 5 pm, 8 pm, and 10 pm, I then put in 100 ml Jevity and 200 ml water. If during any of this I got osmotic diarrhea, I went to the previous dose increment and continued that for a few more hours until I felt ready to try an increase. For Day 2, I did 100 ml Jevity and 200 ml water at 7 am and 10 am. If all went well, then I increased to 150 ml Jevity and 250 ml water every three hours for the rest of the day. On Day 3, I began with 150 ml Jevity and 250 to 300 ml of water at 7 am and 10 am. Then three hours later I attempted 200 ml of Jevity and 400 ml water. When it was clear I could tolerate, I graduated to putting all 237 ml of Jevity in at a time with twice that amount of water. I'm sure I could have gotten away with less water, but I was very afraid to encounter osmotic diarrhea again so almost always used the 1:2 ratio of Jevity:water. By Day 4, I was able to get my 5 cans of Jevity (for a total of 1,775 calories) in with 5 feedings. Each feeding took about 20 to 30 minutes (usually water flew in and Jevity took it's time with gravity.�)

Other Sensible Dietary Guidelines
-Concentrate on eating a healthy diet. Avoid junk foods and empty-calorie foods.
-Ask you doctor or nutritionist about dietary supplements, or about appetite stimulants such as:
-Dronabinol (Marinol)
-Progesterones (Megestrol)
-Dexamethasone
-Take any prescribed medications as directed, but ask your doctor if any medications you may be taking can cause anorexia.
-Avoid protein-rich foods before chemotherapy.

(Sources: FreeMD.com; National Cancer Institute; Cancersymptoms.org)

Complementary and Alternative Approaches

Complementary therapies are supportive methods that are used in addition to mainstream or standard treatment. Such methods that may prove helpful in dealing with anorexia include:
-Aromatherapy
-Art therapy
-Biofeedback
-Garlic, herbal teas
-Massage therapy
-Meditation
-Music therapy
-Prayer and spiritual practices

Before pursuing any of these methods, however, make sure you do your due diligence:
-See what claims are made for the treatment: do they purport to cure the cancer (which is likely not legitimate), or to enable the standard treatment to work more effecively?
-Look into the credentials of those advocating the treatment. Are they recognized experts in cancer treatment? Have they published their findings in respected journals?
-See how the method is promoted. Is it promoted only in books, magazines, TV and radio talks shows rather than in scientific journals?
-Be especially wary if you are told not to use conventional medical treatment. Do the promoters attack the medical/scientific establishment?

If you are using any of these methods, your doctor should be aware of this in order to allow the best possible management of your treatment plan.

(Source: Cancersymptoms.org)


Medications to Manage Cancer-Related Anorexia

There are several potential medications that may help you deal with anorexia that may be appropriate to discuss with your doctor.
-Megestrol Acetate - Megace�
This hormone improves appetite and increases caloric intake. It provides body weight gain but that weight gain is more fat than muscle tissue. Studies have found that even when body weight is not increased, there is a rapid improvement in appetite, decrease of fatigue, and an improved general feeling of well being. The dose ranges from 160 to 1600 mg daily taken by mouth. Often 800 mg has good effects with fewer side effects than higher doses.

Early trials have combined megestrol and non-steroidal anti-inflammatory drugs (NSAIDS) and have found stabilized weights and improved quality of life.

-Megace is generally well tolerated. The side effects can include blood clots in the veins, swelling of arms and legs, breakthrough vaginal bleeding, and trouble with your adrenal glands. Altered glucose control in diabetic patients requiring insulin has been reported.

-Medroxyprogesterone Acetate - Provera�, Depo-Provera�, Amen�, Curretab�, Cycrin�
This is another hormone that also stimulates the appetite. In limited studies this medication has increased appetite and food intake with stabilization of weight.

-Corticosteroids: Methylprednisolone - A-Methapred�, depMedalone�, Depoject�, Depo-Medrol�, Depopred�, Depo-Predate�, Duralone�, Medralone�, Medrol�, Meprolone�, Rep-Pred�, Solu-Medrol�. Prednisolone - Articulose�, Delta-Cortef�, Hydeltrasol�, Key-Pred�, Pediapred�, Predaject�, Predate�, Predicort�, Prelone�. Dexamethasone - AK-Dex�, Decadrol�, Decadron�, Decaject�, Dalalone�, Dexacen�, Dexasone�, Dexone�, Hexadrol�, Mymethasone�, Solurex� The best dose and route of administration for corticosteroids have not been established by research. Cost, side effects, and ease of administration should be determining factors on which drug to use. An initial 1-week trial is suggested. The daily dose is usually given in the morning with breakfast or in divided doses after breakfast and lunch. This helps to prevent insomnia. These medications do not cause weight gain but they do benefit appetite and quality of life. Corticosteroids should not be used longer than several weeks because of the side effects. Possible side effects include swelling, muscle weakness, decreased potassium levels in the blood, elevated glucose levels in the blood, depression and unrest, and suppression of the immune system.

-Cannabinoids
Marinol�, which is legally available synthetic marijuana, has been found to produce some appetite stimulation. Taking the drug at bedtime may avoid some of the unwanted effects.

(Source: Cancersymptoms.org)

-Progestagens (megestrol acetate and medroxyprogesterone acetate) Progestagens are the first-line therapy for cancer anorexia (as well as cachexia).They are highly effective in relieving the symptoms of cancer anorexia. In a recent systematic review of randomized clinical trials, high-dose progestagens were shown to improve food intake, and to a lesser extent body weight. However, they should be used with caution in hormone-dependent tumors, and their use may lead to deep venous thrombosis, vaginal spotting and sexual dysfunction. Also, body weight gain induced by progestagens is mainly due to water retention, and no effect on skeletal muscle mass has been demonstrated.

(Source: Nature Clinical Practice Oncology (2005) 2, 158-165)

Anti-Nausea Medications Ask your doctor about anti-nausea medications that might help counter anorexia, such as:
-Compazine
-Reglan
-Zofran

(Source: FreeMD.com)

Other Tested Agents

There are other agents you may wish to discuss with your doctor.
-Eicosapentaenoic acid (EPA) -This agent is a fatty acid derived from fish oil. Studies are finding weight gain in cancer patients who take EPA. The side effects are diarrhea and abdominal bloating. Abbot Nutrition has produced an EPA-enriched nutritional supplement called ProSure. It is recommended that you take two cartons for at least 8 weeks if you are experiencing weight loss.
-Metoclopramide - Reglin�, Clopra�, Octamide�, Reclomide� This agent is felt to decreased anorexia and feeling full after only eating a small amount of food.
-Thalidomide-Thalomid� This agent decreases anorexia and nausea, and results in weight gain for cancer patients. Potential side effects for thalidomide include neuropathy, low blood counts, drowsiness, and birth defects in offspring.
-Melatonin Melatonin has slowed weight loss in cancer patients. Recent studies have found that it increases appetite and promotes weight gain in patients with cancer.
-Granisetron - Kytril� and Odansetron - Zofran� These agents are used to treat nausea during cancer treatment. They also improve your ability to eat. Further testing is needed to define their role in the treatment of anorexia.
-Branched-chain amino acids Given orally, these agents have been used to decrease the severity of anorexia in cancer patients.
(Source: Cancersymptoms.org)


Agents Still Being Tested

Ghrelin is a hormone produced by the stomach and promotes food intake. It has been found to be at normal levels in cancer patients tested so may not be as helpful as researchers had hoped. Anadamide is similar to cannabinol and is being tested in animals.

(Source: Cancersymptoms.org)

Supplemental Methods for Getting Nutrition

During aggressive treatment for head and neck cancer, nutritional supplementation is often needed, including oral supplements, feeding tubes and intravenous feedings. Before and after surgery, patients who are severely malnourished benefit from the feeding tubes and intravenous feedings. Stem cell or bone marrow transplant recipients also benefit.
Oral supplements can significantly increase total daily nutritional intake when they are taken between meals and at bedtime. They can also be used when you are having difficulty eating solid food. There are commercial preparations available but homemade recipes can be found in a number of resources.

Enteral feedings are liquids that are delivered by feeding tubes that can be inserted through the nose, or through the abdominal wall directly into the stomach or small bowel. These routes are beneficial when people cannot eat but whose gastrointestinal system is still functioning. Heated fluids can provide a feeling of warmth, and feedings can have flavors added.

Parenteral nutrition is a method of getting nutrition through an intravenous tube into a large vein in your body, and can be used for people who do not have a functioning gastrointestinal tract. Because there can be a risk of infection at the location where the catheter is inserted, and because the benefits of this type of nutrition are not as well documented, this treatment is not widely used.

The ability of your body to absorb nutrients from the foods you ingest is dependent on a healthy gastrointestinal (GI) system. Cancer can affect this system in many ways. As long as your GI system works, it should be used. Lack of use of the GI system can cause more problems that will affect your nutritional status.

Benefits of oral (by mouth) and enteral (by feeding tube) nutrition versus parenteral nutrition:
-Maintain health of the GI tract by using it regularly.
-Support the immune functions of the GI tract, which also keep you healthy.
-Maintain the balance of normal bacteria in GI tract, which is necessary for good health.
-Lower risk of infection.
-Lower cost

When to Call Your Healthcare Team
-You've eaten poorly for several days.
-Your amount of urine is decreased.

(Source: Cancersymptoms.org)

John

Good start: some basic comments: A major component of 'loss of appetite" is LOSS OF TASTE. My taste buds are fried from 7200 GY and from the board postings, my gustatory journey of food tasting very bad, then just bad, then no taste, then cardboard, then okay -just bland was not unique. I suggest at least a passing mention that oral cancer treatments often destroy or substantially impair one's ability to taste, with a concommitant reduction in appetite. Of the medications you listed, only marinol would seem to address that (although a friend in San Francisco uses a "Vaporizer" which purportedly releases the THC without any combustion or burning since he cannot get DEA clearance for marinol.)
Secondly, the mechanical aspects of not being able to swallow are also a significant factor in anorexia. It hurt very much to swallow for months and I just toughed it out but trust me, when each swallow is painful, then your appetite declines.
It could just be me, but I did not see these two factors addressed enough as a distinguishing factor for OC anorexia in your draft.
I did learn a lot though about the difference between anorexia and cachexia - and it was very comforting knowledge. I have been worried about my weight never coming back and worried about cachexia but since I have kept and increased my lean body mass and muscle - just lost ALL the fat - that is one less thing to worry about. So Thank you John

Nice work, John!

One thing I noticed is that prior to this sentence:

"-If you are having trouble keeping food down, you might try using a food pump...."

----I don't think you mentioned feeding tubes (text refers to oral intake only at this point).

Some readers might think you can get a pump and stick a tube in the throat and pump the goodies down!

Nice job!

As far as relating this to OC patients, several things could be added.

Its not for lack of desire to eat its from the result of surgery/radiation/chemo that ruins an OC patients ability to normally consume foods. Its due to lack of taste, sensitized tongue and mouth, dry mouth, mucous, trismus, pain, loose or missing teeth, fatigue, modified tongue, surgery in the throat or mouth areas, open sores or blisters, and inability to swallow or chew properly. These are all things that oral cancer patients endure while going thru treatment and healing. All the while trying to eat and swallow which is nearly impossible much of the time which to me is complete involuntary anorexia. This should be brought out more. Its something only oral cancer patients and their immediate caregivers understand.

Eating is a huge thing for oral cancer patients. I have not eaten a real meal in almost 2 years due to ongoing lingering after effects which are beyond my control. How I would love to sit down to a regular meal of anything, doesnt matter if its tacos, steak, pizza, or just a salad.

I would bet that if the figure of 54% of chemo patients lost weight, for oral cancer patients it would be 95%. Unfortunately oral cancer cant be treated successuflly with chemo alone.

I did also notice the feeding pump part. It made it seem like it was an option for anyone when its only for those who have the PEG tube. Even with the PEG tube I still lost 65 pounds.

A couple suggestions for avoiding anorexia seemed incorrect, like adding seasonings. For most of us, seasonings would be out of the question for quite a while due to the oral problems I mentioned above. Any spices would burn our delicate mouths. For relearning to eat texture plays a huge part. Foods that are 'smooth' work best for beginner eaters.

Overall, I found your report very interesting. Many small details were included. It must have taken you a great deal of time and work to compile all this info and put it logically together. Im looking forward to your next topic.

Thank you!

Great points--I'll definitely add them to the article.

Thanks so much, and best wishes.

Good observation, Catherine. Thanks, and best wishes.

Thanks for the comprehensive and very helpful feedback, Christine. Regarding your comments about the tips I listed involving seasonings, etc., it's clear to me now that those were intended for people suffering from non-OC types of cancer. I'll remove them from this article. I'll also incorporate your other great suggestions.

Thanks again, and take care.