Hi my name is Edgar. I'm 42 y/o and going through what Max is experiencing. In addittion to radiation 5 days p/w, my treatment consists of Erbitux once per week and Cisplatin every three weeks. I just started, I'm on my eight radiation second Erbitux and one Cisplatin. I lost taste three days after radiation started. I also lost twenty lbs already because I had an infection of the lymph nodes and was admitted to the hospital. I am recovered from it now.
It is hard for me to eat I get hungry but I have a lack of appetite. As it is I am a thin guy but I'm afraid of loosing even more weight.
I am trying the liquid approach for now until I decide about the PEG.

Edgar --

You need to meet with your cancer center's nutritionist and get some professional advice. Most CCC's really push their patients to get a PEG up front, before they get too debilitated. You have already lost as much weight as my husband did all through his treatment and you are just getting started. You need adequate nutrition and hydration to deal with the chemotherapy and radiation, your docs will not want to halt or take a break in treatment (it can reduce effectiveness) but will have to if you lose too much weight.

Most CCC's have a limit on how much weight they will let you lose before they esentially insist on a PEG - maybe 10% at most of your pre-treatment weight. What percentage have you lost?

Havng said that, some folks do get through without a gastric tube -- my husband had one put in and never used it -- but for others it was quite literally a lifesaver.

Talk to the nutritionist and get the full story -- also she/he will have advice on foods and liquid diets, there are a number of high-calorie liquids available, some are prescription.

Gail

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Edgar, This is a tough adjustment time for you (as it is for everyone) I remember really well how fast I lost saliva function it was the pits. Shortly after that the radiation causes loss of appetite. Then after that sore throat.

I used a blender and used it a lot! Gravy, soup and fats and oils. You need not worry about your diet for now. you really can put anything in a blender and add liquid to make it easy to swallow. You will find some things taste weird to you for a while. I found meat and eggs always tasted like they should. I didn't waste any time on breads or dry foods-took too long to bother. Smoothies in the blender (fruit and icecream) also worked well especially when your throat hurts. I and several here made it without a PEG. Keep your doctor informed about your weight and don't forget to drink water!

Gail, Mark . . thank you for your advice. It's good to know about your stories, it gives me strenght. I will apply your methods right away.