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'!!!