Taste Buds - when will they return!?

Reggie13 said:

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)

Well its been a year since I had Radiation and Chemo treatment and mine was 7 weeks also, I have just started getting my taste buds back. But I was told to try lemon drops for the salivary glands, and I have been doing that for 3 days and they are coming back. It has been hard for me but I'm getting through it.

Shelley Cantrell said:

Tonsil squamous cell carcinoma

My husband has just started treatment for tonsil cancer. Surgery was done to remove the cancer. Treatment plan is  3 chemo treatments every 21 days and 7 weeks radiation while taking chemo.  He is finishing his 2nd week of radiation and the doctor ihas already suggested he get a feeding tube. Also, doctor told us he would get to where he can't eat or swallow? So confused on what to do.  Not sure what your experience has been or if you can help give us any advise? Any suggestions on what might help to elevate some of the taste bud problems? Any information would be greatly appreciated.

Shelly,

I am one year, as of April 5, 2015,  since my diagnosis of stage 3, Tonsil cancer and 3 lymphnodes involved,  with the exact same treatment regimen that you are describing. 7 weeks radiation , 3 chemotherapy treatments (CISPLATIN) days 1,21,42. My last radiation treatment was July 11, 2014.  I did not do the 3rd chemo treatment as I had lost more than 40 pounds at that point and was very, very weakened. I would recommend that he get the feeding tube before he loses too much weight that will make his recovery more problematic. I am guessing that by the time you read this he has all but completed his treatments. My taste buds are better than they were but nothing tastes as I remember with the lone exception of raw oysters. Vanilla milk shakes and vanilla protein shakes kept me going post treatment but my feeing tube was in place for more than 3 months post treatment as my throat was just enraged with inflammation and and I could literally not swallow water. All in all the best advice is be patient with him and be his cheerleader, not his coach. He will feel terrible and have lethargy for months following it all. I was useless until December/January at least 6 months after the last radiation treatment. He will feel worse in the 3 months following his last treatment than he did during treatment. The best way to describe what will happen to his tastes is some people get it all back, some get none, most get some but to varying degrees. Same for his saliva. This a tough row to hoe but it is do-able. I have. He can. Vinegar for me is overpowering, sweets don't have much taste at all. Red wines are undrinkable, some white wines with an ice cube are drinkable, no hard liquor at all. Guinness beer is ok as it has a smoother finish than other beers. Steaks taste ok if not overcooked and a little "fatty". Chicken is awful. Salmon is good. Pasta and red sauces are awful. Mashed potatos with gravy are ok. Some raw vegetables are ok, snap peas, celery, not carrots(too hard to swallow). Summer squash is fine when steamed. Try everything. Wish I had better newsbut the treatment regimen works. He will survive. Be well and good luck.

Bruce

Finished my last radiation treatment on Sept 21st. Been reading older posts about loss of taste, loss of saliva, and terrible sore throat to gain information on how long these side effects will last. I wanted to start a new post to see newer repsonses from new people.

 Without going into too much detail I had a tumor at the base of my tongue and it had spread to right tonsil and one lymph node just under my right cheek, It's very hard to keep a positve attitude with the pain I still have. A feeding tube tube was placed with about 2 weeks of rad treatment left due to not being able to eat food any longer and I could only sip water. Not drink it or any other liquid like normal. At 62 I'm starting to feel like life is just about over. I don't think I can go on living like this. Please someone tell me that my taste will come back and things will get better. I thought that the pain in my throat would subside by now but it hasen't. Am I being too impatient? My rad doctor is telling me that it will take about 2 months for the taste to start coming back and about 4 weeks for the sore throat to start easing up. I don't believe him for some reason. He said that the saliva gland on the right side will not come back the the one on my left side will come back and make up for it.

Hi all and God bless you. I was diagnosed wth Squamous cell carcinoma October 2017 right tonsil. It was removed and I received 33 radiation treatments. I am 67 years old. I have a peg tube and have lost 30+ pounds. I am 9months after treatment. I have ate very little food. I have tried everything as you have to no end. A friend told me about a tiny berry that comes from an Emerald tree. It is called The MIRACLE FRUIT. PLease researh this. (MiracleFruitFarm.com). I ordered 30 tablets. It is a natural flavor enhancement. You let it melt on your tongue to coat the surface. Then eat a meal or drink. It is unbelievable. After not eating for so long because of the taste. I ate my first meal spaghetti and drank my first soft drink in 9 Months. Grapes that were impossible to eat taste wonderful. Please please try this. I hope it works for you. I now see a new light. I want to hear from you. If you try this and it helps. 

I am nearing the end of chemo and radiation for throat cancer. I must admit, losing my taste has been the hardest part of all this! Including the throat pain, the exhaustio, and all the other side effects. I do have a feeding tube but constantly crave food. I am praying for it to come back on a daily basis. God and my family have gotten me through this. I’m confused that out of all the technology that’s available, there’s nothing to protect your mouth during these treatments! I would love to invent something so that nobody else has to go through this! 

And am hungry a lot but unfortunately mine never really came back and am lucky to have maybe 20%?  That doesnt mean yours won't and only hope for you that it does.

I must say for me that was the hardest part of the entire journey. I would go to buffets and tast everything looking for something I could taste. Everything tasted like paste. I rinsed after every treatment with tumeric. I was pretty luck within about 2 months my complete taste came back. Wish him all the best, nothing more difficult than to try to eat without taste. If you've never experienced it it is hard to imagine. 

He did much better then me for the treatment I lost 60 lbs and needed feeding tube. It is a little over 4 months and from hating all food I now can eat a lot of things now as long as they have sauce or I drink Yoohoo, yes try yoohoo, for some reason it taste good from the start. Hope this helps