Taste Buds - when will they return!?

It may seem like forever, but it is in fact (at least for me) about 4 to 6 weeks. I can understand your frustration totally. Just hang in there and you will slowly begin to taste things again. In my case (tonsillar) my taste buds returned completely. However, I was not as fortunante with my salivary function. I wish you well.

Can he taste anything? My man went thru basically the same thing and lost his taste buds and the dr. will tell you "it depends". If there are things he can taste ask what part of the tongue he can taste them on. Or what does it taste like...the tongue has (I think) 7 taste zones. Then concentrate on those tastes. Mine, of course, could taste steak and lobster....nothing cheap!!! lol....I didn't care. That's what he got.

In some cases the foods loved the most can taste like metal or nothing. Just keep trying....I did "power shakes" of ice cream, milk or cream, chocolate syrup, yogurt, fruit, that wasn't really that acidic because it burns like hell on the new skin in the throat and boost or any hi carb/body building stuff available. The cool effect of the icecream felt good on the sore throat and got the nutrition in there. Hope this helps.

Well for me, I never really lost all my taste buds during or after treatment. I had 48 rounds of radiation and concurrent chemotherapy to treat my advanced stage of tonsil cancer. But some food doesn't taste the same as before especially the sweet one. No problem with the salty and bitter one. No spicy food because it burns my tongue and throat. I learn to imagine the original taste when eating food that has a different taste.Loss of taste buds is not so frustrating as loss of saliva glands in my case.

Ramseur7 said:

I thank everyone who has responded to my message. Hopefully he will have taste buds soon. It is not that he has no taste buds...things just taste terrible. Everything tastes so bad to him that sometimes if he tries something, the gag reflex sets in. He is on Boost Plus shakes made with ice cream and whole milk. Occasionally he will eat/drink chicken broth, although it does not taste good. Just this week, water has been tasting metallic and yogurt tastes like aluminum foil. I hope he can taste steak and lobster! He would love that. How could your husband swallow the steak? Wasn't that hard? Oh yeah, his skin is looking good now. He used Biafine and Emu Oil.

My husband was recently diagonsed with the exact same cancer. He underwent a radical neck dissection in Feb. and will begin radiation on the 22 as well as Chemo. Reading your messages I have gained a real insight to the future and I thank you for sharing this.

Hi Ramseur7,
I, too, was diagnosed with sqamous cell carcinoma of the base tongue in April of 2003. I had both chemo and radiation treatment for 7 weeks. My doctors said studies show that this is the best way to treat this. I did have a peg tube inserted and still have it. It's been almost 7 months since I completed my treatments. I still do not have any salivary glands or taste buds. The doctors said that they should come back but don't know when. My Faith is the only thing that keeps me going. I can relate to you in wishing that at least you had the taste buds. I, too, think I could tolerate things much better if I had them. I want to eat soooooooooooooooo bad. I know this is not the answer to your question but I just wanted you to know that someone else out there is going through exactly what you are. Sometimes it helps to know this. Please feel free to write me if you wish. With your permission, I will had you to my prayer list.
Hang in there Buddy,
Reggie
(Reggie13 from CSN)

karenleung said:

Well for me, I never really lost all my taste buds during or after treatment. I had 48 rounds of radiation and concurrent chemotherapy to treat my advanced stage of tonsil cancer. But some food doesn't taste the same as before especially the sweet one. No problem with the salty and bitter one. No spicy food because it burns my tongue and throat. I learn to imagine the original taste when eating food that has a different taste.Loss of taste buds is not so frustrating as loss of saliva glands in my case.

My husband had extensive surgery to his throat, and 10 weeks of daily radiation (5days a week) in 1994. The changes he mostly noticed and continues to notice, are things taste more spicy than they actually are, including catsup (which he loves, just not as much as before) He also found that anything tart, became much more so. His taste for sweets is great and his craving for them has greatly increased. He says you just learn to adjust to the different tastes. Hope this helps some.

karenleung said:

Well for me, I never really lost all my taste buds during or after treatment. I had 48 rounds of radiation and concurrent chemotherapy to treat my advanced stage of tonsil cancer. But some food doesn't taste the same as before especially the sweet one. No problem with the salty and bitter one. No spicy food because it burns my tongue and throat. I learn to imagine the original taste when eating food that has a different taste.Loss of taste buds is not so frustrating as loss of saliva glands in my case.

I had sqaumus on the left lateral tongue, diagonsed in 10/02 T2 M0; on 11/20/02 underwent radical neck dissection which removed 53 lymph nodes and the large salivary gland on the left side. Also had a muscle flap from the neck flipped over to close a communication in the mouth base. The tongue was reduced by 1/3 in a hemiglossectomy. Recuperated through December, then did 33 radiation treatments, no chemo. Tastebuds went away about half way thru radiation.
After the mouth mess, for about six months and anemia (hospital stay) the summer was when the buds started to return. Of course the whole mouth pH changed and sensitive to many things. Bland foods and puree works okay. Now it is March '04 and the taste buds are back, but missing those where surgery took them. Most foods
are palatable but beef is cardboard, no subtle flavors are recognized. I have tried reintroducing certain foods in the diet, but no avail. Overall, Boost, the blender, soft fish and yogurt smoothies keep me going. Every once in a while a cheeseburger with milk is good, but takes 1/2 hour to eat, since I have limited mobility of the tongue. Biggest issue now is full teeth reconstruction due to radiation induced decay and the loss of salivary output. But overall, I'm doing well and trying to gain weight. Let me know if you want more on the experience

slevtov said:

Waiting for Taste and Saliva to Return
My husband had a squamous cell carcinoma in his left tonsil, that had spread to the surrounding areas. It was treated in 2004 with radiation and chemotherapy. Once all PET/CT scans were clear, he then got immunotherapy. It is now 4 years later and he still has almost no saliva and his sense of taste is very impaired. The only food he seems to enjoy is Thai food: Somehow the spices and sauces are pleasant for him. He cannot bear to ingest foods or drinks that are cold, so now he drinks warm to hot water with meals. The foods that are best tolerated are rich ones, like whipped cream, butter, soft boiled eggs, melted cheese. For a long time his doctors put him off, saying they weren't sure when his sense of taste would return. Finally an intern admitted to him that it would probably never return. Very frustrating!

No saliva
Yes Slevtov, it is VERY frustrating. I am almost 3 years post tx for squamous cell base of tongue cancer and I can relate to that frustration. I was told that it will probably never return also, and I'm constantly reminded how maddening it is. The love of my wife and family pulls me through each and every day. God Bless, Ron.

megjohnson said:

taste buds
I was told by doctors that it would take months to get the taste buds back, and, i was shocked and surprised that it only took 6 to 8 weeks, just in time for thanksgiving. It's by far the worst part of treatment, including the painful parts, bc emotionally it's extremely frustrating. But, they do come back, a little at a time and it becomes quite an interesting experience. Cinnamon and pepper were the first taste buds I got back and I was obsessed with cinnabuns for the first week or so and then more complex taste buds came on after that. I even found my wine tasting skills have improved since my treatment. Weird??? very. But, all in all, they are the same and I was able to gain back most of the weight i had lost. Good luck.
Megan

Mom had salivary gland cancer
My mom 82yrs. old has/had salivary gland cancer,she had a tumor removed from behind her ear and went through 36 radiation treatments. She finished them in the middle of Nov.2008. By the time she finished her mouth was fried, ulcers on her gums, has thick skin in the back of her cheek that she bites every now and then, a spot on her ear that is still scabbed and weepy, no taste buds......it hurts to brush her teeth, even pickles on hamburgers (which by the way, taste like cardboard I've read the comments that say the same thing) pickles burn- everything is "just terrible".She can taste sweet- oh yeah she's diabetic so that isn't so great. I finally found a tooth paste that doesn't set her mouth on fire. It is training toothpaste for toddlers. I also bought her a Dora the explorer soft tooth brush for ages 2 and up for her birthday this Friday. She said both paste and brush feel really good on her gums (paste has no mint flavor which can set a sensative mouth on fire). She was using baking soda but, that was starting to dry her mouth and crack her lips. Does anyone have any other suggestions? She also wears a partial that doesn't fit so well. When they did the surgery on her tumor she sustained a little nerve damage. She has also had cyberknife procedure done on a spot on her lung, and in a couple of weeks she'll find out what they are going to do with a small tumor she has on her thyroid. By the way, she never smoked. Keep her in your prayers her name is Julia. Thanks Mary ann