Hi, my name is Shane. I just wanted to introduce my self and brief you on where I am at. I found a lump in in my neck and my ENT diagnosed it as a Brachial Cleft cyst. Upon removal and Biopsy they found SCC cancer. The primary was located in my left tonsil which was removed. I am now in my second week of Radiation (no Chemo). Food has already started to taste horrible and the thought of eating makes me what to vomit. I have been drinking ensure but now that stuff is starting to make me gag. I have lost ten pounds since july 29th, down from 145.

Hi Shane, Welcome. Has anyone suggested a feeding aka PEG tube. I know there are alot of opinions on the subject. My husband has had his for almost a year now and it has saved his life. Any reason they are not doing chemo?

Sue

A lot of folks fight having the PEG, perhaps because it is just about the only thing we have a choice about in this, but I have had two of them and find them to be a good thing (As long as one works on keeping the jaw opening and swallowing liquids every so often to keep it all working).

There's a lot less nausea involved with the PEG because it isn't affecting smell or taste, unless you try to force it too fast and your gut can't handle it.

Consider using higher calorie food like Nutrena 2.0 (500 cal/can) or Carnation VHC (560 cal/can) so that the number of cans per day is reduced to hit the same calorie level. Losing weight right now is not a good thing and it's going to get worse before it gets better.

Get your Doc or Nurse to prescribe some anti-nausea meds.

My second PEG, following my free flap procedure, wasn't a choice -- My mouth and throat were so swollen that it would have been impossible to swallow -- Of course, there is always the alternative of a Naso-Gastric Tube (NGT) with a pump to push food through your nose...

Pete,

I really wasn't given a choice on the PEG. And its a good thing too! My instinct was to refuse the second one, after the first one had to be removed, but the docs were right. There's no way I could be getting in my calories now with my mouth in the shape its in. My docs were truly saving me from myself!

Shane,
Your weight is frightening. It seems you must not have a PEG.

Are you being treated at a Cancer Center by a multidisciplinary team?

I have had weekly appointments with Dietitians since surgery and their job was to fatten me up and get me ready for using the PEG and formula.

Post surgery, I was immediately gaining weight.

This is likely to only get a lot worse and at your weight you really need to get pro-active with your medical team.

I would ask them if you might still be able to get a PEG and if so do it this week. You will regret getting PEG for a few days, but after that really be glad you did.

Shane,

I question why they did not recommend any chemo especially since you had a positive node.

I did not opt for a Peg and believe me it was rough going but it did force me to continue swallowing and I have not not any post Tx swallowing problems. If you do decide to get the Peg you need to tell your doctors ASAP as they usually won't installed it if your too weak or your WBC drops which can happen as your Tx progresses.

Shane, I echo David's staement above. I also went thru this without a PEG, is was hard! I am surprized that you didnot recive Chemo as my case was also in the left tonsil. Good luck in your WAR. Bob

Hi Shane.

Welcome to OCF. You will find lots of support and answers to your questions here. Has your doctor said anything about your weight? Do you see a dietitian? My doc and dietitian both had a fit when I dropped 15 pounds in one week when I was starting radiation.

As several people here mentioned, a PEG tube is a very wise decision. If you are starting to struggle already, then it will become a necessity very quickly. Talk to your doc asap about it.

Without proper nutrition and hydration you will end up being hospitalized. Ive been there twice for malnutrition and dehydration and that was with a peg tube. Without it I would have probably been admitted for the whole duration of treatment. Make sure you are getting a minimum of 48 oz of water daily.

I wish you the best of luck with your treatments. Please keep posting as questions arise. You have found a great place that will support you thru this journey.

hi shane my husband never could stand ensure he has had a lot of luck with walgreens nutritional drink plus 350 calories a can mixed with milk for the last two years good luck to you

I had a neck dissection and partial tongue removed. I practiced swallowing using my imagination while they were feeding me thru atube. About the 3rd day I told the nurse i could awallow so don't crush the meds but put them n my mouth. She edid and I did. LOL She couldn't believe I could swallow. I lost 70 lbs in short order but I tried to keep up the flow of liquids to my stomache. Gradually it is packing back on my frame. Go for the Carnation VHC, that;s what kept me going. Good luck and fight hard. Had a lot of other things done to me too.But yiu know what?? I am alive and kickin, just not too high or hard.