I rang the bell signifying the end of radiation tx yesterday and that is a relief. Am dealing with mucous and difficulty getting enough calories in, but part of the calorie problem is due to the complete loss of taste. Actually, most tastes are gone (e.g. cannot taste sweet at all, ice cream is like chalk to me), while a few are exaggerated (e.g. spicier flavors). Fortunately I still find Boost palatable, and mix it with whole milk to make it a palatable consistency, but it's hard to force myself to drink enough and is all I can stomach. I am looking forward to getting some sense of taste back. I am hoping to avoid a feeding tube. Fortunately I have very little pain and no difficulty swallowing.

I am wondering how taste problems have been for others, and how quickly it might come back enough to make one able to eat normal food again. Does anyone have ideas to help force in more calories? Have tried weight gain powders body builders use, many kinds of juices and desserts, but they have not worked. Thanks.

Hi Ed,

My taste was pretty much completely gone as well (opposite to you, I was able to taste sweet more than anything), but taste was the first thing to come back! I think I was able to start tasting within a week after i finished treatment. this was a problem for me as I couldn't stomach the ensure once i got my taste back, and it hurt to bad to eat anything else. my taste is now back 100% though, and i am eating all of the foods i used to eat (except spicey). good luck

My taste began to return about a month after I finished rads. Most of us take a while to regain our sense of taste. Emily was extreemly lucky to be able to taste again so quickly. Thats the fastest Ive seen on the forum. It will slowly return and can take many months to fully come back. For some members it takes a full 2 years to completely recovery their sense of taste.

Hang in there you have a whole lot of healing to do. Congrats on finishing!!!

Thanks Christine and Emily. I hope it comes back soon, as living on Boost alone is not easy, and being able to add calories from real food again will really help. Am hoping to avoid a feeding tube! Take care.

I am still waiting for some of it to come back the closer the food I am eating is to it's natural state the better it tastes. Anything with chemicals added (pop, mixes, canned and prepared stuff) tastes horrendous.

I'm 19 mos out from surgery and as of tomorrow 17 mos post chemo and rads. ;o)

most stuff is okay but my sweet is still illusive at times.

Ed, I just posted my recipe for a chocolate peanut butter milk shake. Why not give it a try? It has around 2000 calories in it. You really can drink 3 of these and wont gain any weight. I would suggest trying one a day continue to drink your formula and water. Here is the recipe...

All ingredients are approximate....

Chocolate Peanut Butter Milk Shake

3 - 4 cups of chocolate ice cream
1 - 2 cups of whole milk
2 tablespoons peanut butter
1/4 cup chocolate syrup
1 scoop of Carnation Dry Instant Breakfast Powder
1 scoop of whey protein powder


Blend the heck out of it until is extra smooth so its easier to swallow.

Christine--thanks for the recipe, but my problem is that nothing I have tried has been palatable because to me it has no taste. Ice cream tastes like chalk, bread tastes like chewed cardboard, etc. It is all so unappetizing that I cannot bring myself to eat it. I will post what follows as a new topic as it goes beyond the original subject of taste returning, but here's more info about my situation:

I love ice cream and milkshakes and could eat/drink those until two weeks ago, but not now. On a whim I even tried childhood favorite, Pixie stix (flavored powdered sugar in a straw) thinking they might be palatable but without any ability to taste sweet flavors they were like sand. I would like to think that the absence of taste would leave things tasting like water, which tastes fine to me and which I have no trouble drinking, but that is not as simple as that unfortunately: I am not left with a neutral taste, but with a distorted, unpleasant, unnatural taste.

I have tried broths, protein powders, about everything I can think of but none of them work for me. On top of it the mucous gives me intermitted nausea and I am experiencing anorexia (not nervosa, just the loss of appetite). I am using anti-nausea meds prn and that does help, as does starting earlier in the day when the mucous is not as much of a problem. It might be easier just to get the nasogastric tube, though I am not sure how that would affect mouth soreness (my palate tends to become sore from radiation and/or burning from gastric acid when I regurgitate), and how a tube would affect my ability to get rid of the mucous. The only thing I can think of is just pushing myself to force down much more Boost than I have been the last week (only about 1200 cal/day, way below the 2500 minimum my treatment team wants me to have and the 3500 that would be ideal). So if anyone has other ideas or hints for getting more Boost in, that would be great! THanks.

Ed, what you are experiencing is to be expected. We have all gone thru this. When I tried to eat meat it actually tasted dead to me. Water tasted burnt like it was tainted with ashes. Just because radiation is finished doesnt mean this is over. Radiation continues to work for a while which is why you dont notice any progress yet. It takes one month of recovery for every week of rads for a full recovery. It really can take 2 years. In a few weeks you will begin to be able to taste food again. But be prepared things will not taste like they should. You may be craving a pie of apple pie but when you attempt a taste it could taste really bad. Its going to be alot of ups and downs for a few weeks but then your ups will soon out number the downs. Hang in there, I know its discouraging. This really will pass and you will recover, it just takes so darn long.

Hi, Ed
My husband tried sugar on a whim and he said is was JUST like sand. All I can suggest at this point is thinking of Boost or Ensure as nutrition ... not food. Also, he drank the wretched things standing in front of the kitchen sink - was easier to get them down.
Although nothing will taste good for a while, you can probably find some drink that is less bad. My husband found my protein shakes better than Ensure, and Ensure better than Boost. He also did better with nature flavors - especially vanilla - than artificial ones.

Ed,

Darth Vader here... If you just finished rads yesterday then be prepared for a couple of rough weeks ahead, perhaps the worst yet. After that, we call it walking out of the tunnel, you will slowly recover over the next 2 years. At first you may have some really bad days but in time the bad days will be replaced with better days. Of course each of us can be different but I saw my 1st taste and saliva improvements at 4 months post Tx, then more at 5 months, then the biggest improvement at 14 months and finally a small + at 24 months. I think taste improves hand in hand as saliva improves but I am not a doc.

I was the same it took months for some of my taste to come back. I was determined tomgt off boost and ensure as soon as I could as I wanted to avoid sugar as much as possible - so I started making my own shakes. Mild tasting with fesh fruit almond milk and vegan protein powder i was eating / drinking to survive. It just takes time. Good luck

"Yah" for the healthy shakes. I have been determined to keep the sugar out of my husbands diet and eat more vegetables. Before treatment he was drinking straight veggie shakes with a base of carrot juice and added broccoli, asparagus, spinach and avacodos. He would get 2 large glasses at a time and just chug them down without stopping. He would see me coming and say he just couldn't drink all that. I would leave them and tell him ok, I just feel better knowing I tried and he always ended up drinking them. Towards the end of treatment when I realized how much sugar was in the canned stuff and that the one brand was synthetic food I started putting the veggies down the tube after watering it down and adding low sugar protein powder. I think the more healthy eating is what helped him heal so fast and get back to normal. He has no pain, no dry mouth and everything tastes good again. If the lymphedema just had not become worse which maybe caused the sleep apnea to come on over night he would be doing great. Oops, I forgot he did lose some of his voice from the laser surgery. It is hoarse sounding and he has no volume. Yesterday while shopping at World Market he bought a metal bell. Last night he tried ringing it expecting me to come and I told him he could come get me just as easy. LOL My biggest problem is trying to find him in the house but he can still whistle good. But then some times I find out he is just calling the dog.

Back to the shakes. Even though he is eating now he still want the veggie shakes but I have lightened up and started adding fruit, some blueberries, strawberries, banana and apple. (Also add chia seeds and flax and protein powder. I make a blender full each morning and I am even drinking a couple glasses. He told me he feels so much better eating healthy and when I drink one I am so less likely to be downing the chocolate all day. Even our 13 year old will drink one as long as I don't cross the line and put too many vegetables in his but it is still green.

When I lost my voice my wife gave me a bell which I found quite useful! As soon as my voice came back that bell disappeared and has never been heard from since.

Now she needs a megaphone. lol

Deb

Cute Deb, isn't that elderly abuse?