Is there any body out there??

I am 52 years old and the Oral Surgeon found a T2 tumor in my left tonsil in early February. My ENT removed the tumor and both tonsil and of course the biopsy came back bad.

After recovering from that surgery, I had to have some dental work done and then started IMRT Radiation two and a half weeks ago.

I currently can't stand to eat, everything tastes horrible.

Is there any thing I can try that might not gag me when I try to eat it?

Hi Max, I am sorry that you are going through this ordeal, however, the radiation was the toughest for me. Everything tasted like cardboard, it was not a good time. Things will get better though. I mostly drank fluids during my radiation period. I know things will get better for you...just hang in there....Carol

Max,
you should be meeting weekly with a nutritionist. You must keep your calories and fluid intake at certain levels or you will impede your healing process - even if everything does taste like sh*t.

I take it that you don't have a PEG?

You are not alone! My dad is 8 days past surgery and also feeling down. He's going to have 6 weeks of radiation once the healing has finished. I'm sure I will be posting here to find help as well. The good news is that others have made it through and we will too! God Bless!
Tracy

Dear Max, yes, there are alot of folks out here! And many are in the same boat with you. Has anyone discussed a peg tube with you? The next several weeks are going to be tough ones for keeping your nutritional needs up. Do you have help at home? Try the following as long as you can swallow: Danny Boy's Shake recipe, yogurt[plain or flavored,lukewarm bullion[beef or chicken]pureed soups, gatoraid,lots of water. Please let us know what you are trying to eat and maybe we can send more suggestions. Keep posting and let us help you paddle this boat! Amy

I am so glad to know there people out there who I can talk to and who understand what I am going through.

I am off work for the duration of my treatment and my wife is here to help me.

I am trying to eat anything I can. Everything seems to have no taste, but there is a nasty after taste when I swallow.

I really do not want a PEG, I am hoping that I can get through without one.

I did notice tonight, though that small bites seem to help.

Max,
You are right at the turning point where it'll get really rough for a while - for as long as 3-4 weeks after you finish radiation in fact. the fatique will start showing up about now. Fasten your safety belt and hang on - keep focused on your new cancer free life after treatment.

Smaller bites, lots of water to wash it down, use a straw to direct the water where you want it. I swotched to liquid foods after about 3 weeks. Lots of experimentation with different food flavors. I never lost "coffee" flavor taste bud for instance so I drank Carnation espresso flavored Instant Breakfast and Hagen Daz coffee milk shakes. I just couldn't get down Boost or Ensure although some here actually like the stuff.

You'll need a swish & spit pain killer as radiation progresses as you start to get mouth sores. Ask your doc for some "pink magic". It's a liquid compound of benedryl, morphine and lidocaine (there are other variations). It will give you about 15 minutes of swallowing time. I also used to pop a 15mg morphine sulfate tablet, as well, about 30 minutes before drinking ot eating. You've GOT to stay on top of nutrition and fluid intake at all costs. If you can't then I strongly suggest that you get a PEG. I did it without one, against medical advice, and a few of us have pulled it off, but it takes courage, grit and determination to do this.

The good news is that your taste buds should recover and that will start about a month or so after you complete treatment. It is usually a phase in process with salt taste usually being first - sweets being last.

I was diabled for well over a year and my wife was my caregiver as well. Be sure to let het know that we have a thread for caregivers as well.

Goodmorning Max,
I am not that far ahead of you I had cancer in my right tonsil that spread to 1 lymph node, I could eat sparingly the first three weeks but gradually lost desire to eat, such a horrible taste, textures felt funny and swallowing became difficult, Thank god for the PEG tube, Max it really is very unobtrusive, it too k some time to get used to it but then it was not very noticable and easy to use and take care of. I really relied on it yet I still lost about 35-40 lbs, I have since gained back about 20-25 of that. I had the PEG from Oct 31 until Feb 9. I did eat alot of yogurt during that time and would try little bits of meals, most did not work but I kept going back to them. Now most of my taste 80% is back some difficulty swallowing but generally doing well, I also had a modified neck dissection and I think that attributes to most of my swallowing problems, but trust me Max those things do get better every day. Best of luck my friend, hang in there. I think you should ask about the PEG it is most important to keep that nutrition up to heal properly.
always lenny

Max, all of your symptoms are normal and may get worse. Sit back, breathe deeply and take things one day at a time. You are lucky to even be eating. Get a PEG installed and get your nutrition through the PEG. I am 100% on my PEG and probably will be for the remainder of my days. It could be much worse...
Darrell

Max,
If you don't mind me asking where in Indiana are you? My father is currently in his fourth week of radiation and it is getting tough. He is also located in Indiana, thought possibly we might be close to each other. He is experiencing all of the things you and everyone else has talked about. My mother and I are trying anything we can that he may be able to get down. You are not alone... we are all here with you going through this together. What a horrible disease. My advice to you and your wife is keep visiting the website and talking to these folks - they have helped us so far... beyond belief! My father refuses the PEG so we are doing the best we can.