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!