I was diagnosed with a cancerous tumor in my tongue in December after having a semi-glossectomy (one-third of left half) in November. I had completely recovered from the surgery and was back to normal before treatment began in February. Finished RT about 10 weeks ago. Having lots of trouble getting back to normal now. Taste buds have returned but seem to be super-sensitive. There's a sore from the RT on the tip of my tongue that won't seem to heal. Very little interest in eating when I used to have an almost never-ending appetite. Thankfully, I was very overweight because I've lost 65 lbs since October. What I'd like to know is if there is anyone out there with a similar situation, did you get back to normal and how long did it take you?

Lorraine

Welcome to OCF! You are still very early in the recovery phase. A complete recovery can take a full 2 years, especially your sense of taste. You will have ups and downs and setbacks as you get better.

Losing so much weight is NOT good! Even being overweight to start, the doctors dont like to see such dramatic weight loss. You also lost alot of muscle which is next to impossible to regain. Since you lost so much weight, that tells me your intake is not what it should be. Every single day from the start thru at the very least the one year post rads mark you need to meet the daily minimums. Every single day you must take in at least 2500 calories and 48-64 oz of water. Anything less and you are cheating yourself. Recovery will be much harder if your intake isnt at least those numbers. I know its not easy but you must do this to help yourself get better. Im speaking from experience, I spent way too many nights hospitalized for malnutrition and dehydration. It was NOT fun! I felt so horrible I actually thought I was dying. Please help yourself and increase your intake. Honestly, you could take in 5000 calories every single day and you would not gain one ounce. Your body is beat down, malnourished and it needs to rebuild itself. It takes fuel to do that. Ive been here for over 7 years and seen so many patients in the same situation as you. Unfortunately there is no easy way to get well except thru your intake.

Hang in there, it will get easier. Plus now you have our forum to help you. Good luck!

Hi, Lorraine. I finished radiotherapy on 19 May, so I'm 4 1/2 weeks out. Like you I have recovered much of my taste but not appetite and enjoyment. I think we just have to take very good care of ourselves and eat out of duty, if not for pleasure. I eat some normal food but the bulk of my calories comes from thickshakes made with formula and enriched with chocolate ice cream and tinned fruit. I DO enjoy these shakes now, drinking them with a straw so minimal sweetness makes contact with my teeth:)

Like you I've lost weight and I was trying hard NOT to! I enjoy the new body shape but I'm scared of getting too thin because my overall health, fitness and strength mean a lot to me. I like to walk vast distances and won't be able to do that if I lose muscle strength.

I kind of expect to return to normal in four months after starting treatment, because that is what the RO said she advises people: take 4 months off work. However, from reading people's accounts here, I know it can take a lot longer.

Hope you feel better soon and please heed Christine's advice: it has helped me:)

2 YEARS?! So not what I wanted to hear. I was hoping someone could tell me that they pushed through and recovered in a few months. At least in terms of eating. I know the fatigue can last longer because this is my 2nd cancer diagnosis. I had breast cancer 10 years ago and it took me at least a full year to regain most of my energy after that chemo and radiation treatment.

Lorraine

Im so sorry to be the one who gives you unpleasant news!!!! Your body has been thru heck and it takes time to recover. Surgery swelling and your body's adjustment to it can take a full year. It takes the body one month for every week of rads to recover. Its mostly the sense of taste that takes the longest to get back to normal. Most patients will be doing so much better about 4-6 months post rads. Please understand everyone is different and will do things at their own pace. It just takes time to get better from everything you have been thru.

After I went thru rads w/ chemo I returned to my office job part time 6 weeks after treatments. It was really hard but I was able to eventually handle all aspects of my job and work full time around 4 months post rads.

You will get there, it just takes more time than any of us like.

The firstyear is the most difficult BUT the most rewarding as your body will continue to heal itself and things will improve so it's really all good but it will take time. I was consuming appx 3000 cals each and every day my first year and I didn't gain a pound so it tells you how much energy is being expended "behind the scenes" for recovery. Eat anything that tastes good. I lived off of Boost VHC, pancakes smothered in syrup and runny eggs, TV dinners with tons of gravy, etc. I didn't care about fat content, in fact the ones with high fat tasted better so the hell with it, give it to me!!!

My taste returned at 4 months, 5 months, the most at 16 months and then a tad more at 24 months. I'm now 8 years out and it's just a bad dream. The worst part of surviving this Tx is you get older!

I think the biggest problem for me is that nothing sounds good and I can't eat much yet because of the limited tongue motility. The easiest foods to eat are fatty foods and the grease just turns my stomach. I can't even talk about eating an egg again. The things that sound good, I can't eat. I desperately want a sandwich but I can't coordinate the chewing of it. I have always had a problem with shakes and smoothies because of the thickness. I do have a PEG tube but the smell nauseates me. I want it out so I don't have to deal with the smell anymore. To that end, I want to eat on my own but it hasn't been easy. I've basically stopped using it. I appreciate any advice and information.

Hi there... been there.. it takes time... and patience and persistence.

Go for bland foods that are soft and creamy. It doesn't have to be unhealthy. Try having a smoothy with protein powder and fruit. Mild foods are best to ease you into the whole thing. I still give up in frustration when eating at times. But mostly I can eat anything and enjoy it now. But it has taken a long time to get to this point (3 years)

To help your ulcer heal - be fastidious about cleaning. After you eat and drink anything, clean your mouth and rinse with the salt water/baking soda mixture and leave it.

Hugs and welcome... you will get better and the desire to eat will return as things begin to feel better. But do mind Christine and eat and drink to survive - nutrition (good nutrition) promotes healing.

Welcome Lorraine.

I'm 4.5 years from my original treatments, plus others, and still recovering. I lost over 110lbs, mostly muscle, in a matter of weeks just from chemo, which was from cachexia aka wasting, which is more than just the lack of nutrition, but is metabolically. Anyway, I gained back 50lbs of the weight I lost. Muscle, fat has memory, and can go back to it's highest highest point more easily than someone else. I found with cancer it's not as quick to regain as before.

I had food aversions for almost a year after chemo. I couldn't eat potatoes, bread and others due to the texture. It took awhile through trial and error to find foods I could tolerate, and then have it change a few months, sometimes for the better.

You're right, fat has taste. There are other fats in healthy oils, butter, foods, which I incorporate often in cooking. Even spraying oil on foods help with swallowing. Last night I made mashed potatoes, and I use a stick of butter, which is the key to make then creamy. Same things with scrambled eggs, like 2 Tbs butter for every egg used, cooked slow, makes them creamy, curd like.

Good luck.