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.