Hello All,
First of all I feel very fortunate that my small tongue surgery and neck disection (which was clear) is really nothing compared to some of the trauma that others on this forum have been through. I am now have had 14 radiation treatments on a scheduled 30. My tongue is a little sore and uncomfortable but nothing really bad as of yet. It was recommended that all my teeth get pulled (which I did) so that I would not have serious issues with them after rads in the future. Now I have lost the taste for sweetness and saltiness. Everything tastes so bland, not even my favorite ice cream tastes good. I drink 1 Ensure in the morning and the rest of the day I eat regular stuff like oatmeal, puddings, soup with crackers and anything else I can manage to swallow to try to keep my weight stable.
My main question is how long does it take for the taste buds to recover after the rads are over before I might be able to enjoy my favorite ice cream or be able to taste the butter on some toast, or get fitted with some dentures so I could eat a burger.
Thanks for reading,
Murphy

First, welcome to OCF! You have found the very best place for info ans support.

During rads, you will gradually notice your sense of taste is changing. Your main focus right now needs to be on your intake. Im happy to see you are eating enough to keep your weight stable. I know this can be very difficult when your throat gets sore, or you have mouth sores. But even if its not easy its imperative that you take in at least 2500 calories and 48-64 oz of water daily. During rads and recovery your body is burning up calories at a highly increased rate to fight both the cancer and attempting to rebuild itself. If you can take in higher calories it can only help make this easier on you. It sounds like you are making out pretty good for being half way thru. Hopefully this will continue and you will sail right thru with few noticeable side effects.

Before you read this, please understand everyone is different and will experience things in their own unique way. Also, the recovery phase is a time that can be very frustrating with ups and downs plus a few setbacks too. Most patients have many ups and downs and several set Most patients will notice small taste improvements that come and go about 3-6 weeks after finishing rads.

We can never recover quick enough so its common to get depressed at not seeing major improvements. What tastes good one day can taste like burnt cardboard the next and in a couple more days it may be the best thing you've ever tasted. Keep this in mind when grocery shopping, buy small quantities of things. If going out to eat, try buffets where you can try tiny bits of many different foods and will find a couple things that you are able to enjoy. Avoid spices (even salt), anything that takes too long to chew and things that are too thick like peanut butter. If you want peanut butter try putting it in milkshakes to add calories and protein. The following list should help you to find things you can eat like canned peaches or cream soups.


List of Easy to Eat Foods


PS....
Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1200-2000 calories depending on how you make it. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.

When most patients begin to taste things like they did before rads is a question that can vary greatly. Some patients will begin to taste some things around the one month post rads while others report a longer wait for their taste to start returning. By the 4-6 month post rads point, most patients will have regained most of their sense of taste.

As far as dentures go, that depends on many things. Im going to guess that after at least 6 months post rads (but it could be at least a year before) you may be eligible for dentures. So much is determined by the shape of your mouth after rads and your recovery. Some patients have painful mouth sores from rads which take many months to heal making it impossible to get fitted for dentures.

Im sure you cant wait to be thru the rads and on to getting well again. There are so many "ifs" that go into the questions you asked, Ive done my best with answering. Focus on your intake and pain management and take it day by day. Soon enough you will be in the recovery phase and getting back into your normal routine.

Hang in there, you are half way thru. Stick with us and we will help you get thru this. Best wishes!

Hi Murphy,

Welcome to the forum.

At our hospital, the dietitian recommends making fortified milk. The idea is to load every mouthful with calories. Every cup of fortified milk has 211 calories and 14 grams of protein. The ingredients are below (for four cups)

Ingredients
1 quart of whole milk or 2 percent milk
1 cup dry non-fat milk (like powdered skimmed milk)
Variation: You can use buttermilk and/or dry buttermilk to substitute for the mild and dry milk.
Non-Dairy Variation: You can use soy milk or almond milk and/or soy powder instead of milk and dry milk.

Just put the ingredients in a blender until smooth. Alternately, you can blend it with a whisk or a fork. Keep it in the fridge.

My husband had this for as long as he could swallow and I do believe that it helped him maintain his weight during radiation.

Hello all again.
17 rad treatments, 3 more than my last post. I have reluctantly started taking hydrocodon to deal with the mouth pain, I do have some of the Mary's Magic Potion but have only used it 2 times. Now eating and drinking anything has become repulsive to the point of sometimes activating my gag reflex. I have tried the drinks in the blender that you all have recommended except with a lot of sugar and protein powder which makes things a bit grainy. I barely can taste the sweetness. I am afraid I might be hurting myself by taking in so much sugar as in the near future I figure that's all I will be able to get down is some sort of drink and no solid food what so ever. Maybe powdered sugar would be better? Thoughts please.

I know its not easy to eat when you have a sore mouth and throat. When everything tastes nothing like it should its even harder. Make certain you are talking honestly with your physician about the difficulties you are encountering. This is especially important when it comes to your ability to eat and drink.

As far as adding extra sugar to your foods, thats up to you but I think its not the best thing to do. Most patients will lose their sense of all taste even sweet and there isnt enough sugar in the grocery store to use that will help make the food taste sweet. Honestly Im surprised you are still able to taste sweet this far into your treatments. If your shakes are grainy, try blending them longer.

One thing I enjoyed that was refreshing and helped to soothe my sore throat was yoo-hoo. It has lots of calories and some vitamins so its not too bad to drink. If you are able to drink your meals until you can eat again then thats ok. Just so you are taking in at least 2500 calories and 48-64 oz of water every day then you should be ok.

If you begin to struggle with your water intake ask your doc if you can get extra hydration a few times a week. After a couple bags of IV fluids you will feel better. Its amazing how lousy being dehydrated can make you feel.

Hello all again,again-
6 days since my last rad treatment, been taking hydrocodon when the mouth pain becomes unbearable. The doctor and nurse said that pain should start to subside after a week of no treatments, have not seen a sign of that yet. Tired feeling most of the time and rads has burned off most of what little beard I had, at least I still have my mustache! Eating still difficult and repulsive, I have to exercise my jaw 2 or 3 times a day as it feels like it doesn't want to open fully. Will go back to work tomorrow, need to get back in the groove but not 100% for sure.
Thank you all for writing back and for the encouragement, I found it difficult to find anybody in my area with the kind of cancer I have and the symptoms I am going through. I did see some people that were a lot off worse than I am, for these people my heart goes out to them.
Bless you,
Murphy...

Wow Murphy you are a trooper ! Back to work tomorrow ? I was still under the table at 6 days post radiation. I do so know how yucky food and drink tasted besides not even wanting to eat. But it does come back, slowly, slowly. I am just beginning to taste foods and what a heavenly thing that is ! My sugar taste is not there yet. Funny, it was the first thing to go and seems to be the last thing to come back. Do please keep your calorie intake up . It is SO important for your health and healing. I got myself in big trouble with this and it sure is hard to fight the weight loss and feeling so crappy at the same time. You are doing amazingly great and worked your way through the really tough spots. Please know that for a little while you probably won't be able to use enough sugar to taste it without being on total sugar overload. It does get better ! Hang in there, you are doing great !