recovering from mucoidepidermoid of the tongue 9cm tumor removed in may. radiation ended august 8th. still on the peg tube and have no appetite. when will I start eating and tasting normal again?

Hi there... welcome!!! Glad you made it through rads! you're a month out now, but really only two weeks because as you know the cumulative effect of radiation lasts for approximately 2 weeks. Hopefully you were working on you swallowing during radiation, if not please try doing the mouth and swallowing exercises that your hospital should have given you. I too had radiation to my tongue and frankly taste is still a little funky for me. I have NO sugar taste at all ( though sometimes when I do have xylitol with my cereal (I try to stay away from sugar as much as possible) I get a shot of sweet that tells me it is coming back - hopefully. I do taste foods, natural foods taste best to me. Salt is a little illusive too. Pops are just plain gross which is fine because frankly they are bad for you. If you don't want to eat it's hard but try to push yourself a little - pick a food that's fairly soft and easy on the mouth. I started off with mac and cheese even if it has no flavour, it's fairly healthy and easy on your mouth and relatively easy to swallow. Alfredo pasta... also good. (tomato sauces and spicy food may take a while to be friendly again. Do eat as much as you can, if you haven't been swallowing save the actual food for a week or two and try doing an ensure first. Also go out for a walk if you can. That will help stimulate your metabolism and may make you a little hungry. It all takes time. But hopefully it will come back. I just finished my fourth month post rads... you can do it. be patient and give yourself a little time.

congrats on pushing through radiation - it's not easy. I was blessed in that I really didn't suffer too much... so I managed to swallow through most of it. It doesnt help that your tongue is probably very swollen (9cm is a large area!) so that's even harder to deal with because you have to retrain your tongue too. Take care and best of luck. There are a bunch of great people here who will offer great advice... you're not alone we've all been there at one point or another.

Welcome to OCF! Wish i had better news. Your recovery can take all the way up to 2 years after finishing radiation. Have patience, it takes a while before you feel a little better. At this point you are only about a month post treatment so you have a ways to go before you are well again. One month of recovery for every week of radiation is the norm. It will happen.

Welcome, Patrick. There are a wide range of experiences on this food subject. It's also the 1st question I asked when I came to this board. I had the peg in for about 3 months after tx as I could barely swallow little sips of water and had to take meds and everything through the tube. I saw a speech therapist to relearn how to swallow (wierd that your body can forget how to do the most basic things). Once I was able to swallow I still lived on Ensure plus and fruit smoothies for about a year. any solid food I tried to eat was dry and tasted like it came out of a dumpster. Any way, won ton soup was the 1st thing I ate that actually tasted good. So I worked my way from soups of all kinds to finally real food. Some things still taste wierd or are to dry to enjoy. I used to love salmon, now no matter how perfectly it's cooked it tastes like stuff that's been previously frozen and seems so dry, even though it's nice and pink, I can barely choke it down. But then Others on this forum were eating solid foods in weeks of tx. Work on that swallowing and keep the calories up however you can, and hydation too. Best of luck to you.