taste buds after radiation

mmalar97 said:

I need your advice
Rose EM: You mentioned that there are not too many things that you can eat. Well, I turned 62, and was pleased that I had lived 5 years past total prostate cancer. Three months later, I was diagnosed with tongue and neck cancer. I had canser taken from my tongue(a donor patch from my hip was placed), and I had 1 lymph node removed from my neck. This was Dec 15, 2009. I started 30 double doses of radiation 6 weeks later. It is now early May 2010. There is one spot below the tongue (deep) that still causes great pain when I try to eat. I can eat eggs fried with bacon( I can't chew the bacon, though I love it). There are 2 to 3 other soft things I can handle. The doctors told me that the sore is nerve damage, and may never heal. I have lost over 40 pounds so far. I needed to lose 30 pounds before I was diagnosed, but now, I can't maintain my weight! I am losing 2-3 pounds a week. Do you have any suggestions for food. I have always loved cheese cake! Michael

foods to keep weight on
my husband, Tom, finished radiation and chemo/cisplatin, for base of tongue cancer, lymph node involvement, in early March. He had the feeding tube and used it along with trying to take a little by mouth each day and didn't lose too much weight. We were counting calories, and protein constantly to maintain the weight and the protein for healing. He had the feeding tube removed two weeks ago. His throat is still not good, and he can taste a little, but he's very worried about the lack of saliva. He now thinks his throat will not get any better than it is now and that his saliva won't increase either - are these likely to stay the same?

Now to the foods that worked for us: Jevity via the feeding tube. Myoplex, a high protein drink from the grocery store, was tolerable by mouth. The whole time we made milkshakes, using the Carnation Breakfast packet, 1/2 c. milk, 1 c. of ice cream. He drank four of these a day. I think the Carnation breakfast milkshakes were the best thing we found to keep his nutrition up by mouth.

Ramen soup was a good soup for him. Cheesy Potato soup mix was also good and high in protein. I bought a little book that gave the protein counts and calorie counts and we kept track every day - because he's a big man, the dietician at the hospital said he needed 220 grams of protein a day, 220 oz. liquid and 3000 calories to keep the weight good. We kept that up most of March and April and into this month.

Once the feeding tube came out, we bought a grinder and ground up turkey and chicken, added gravy and potatoes and noodles, all of which he could eat. Last night, I sauted tilapia and that was easy for him to eat. I've been buying canned vegetables and fruits and he can eat them.

The main problem now for Tom is that he had 8 teeth pulled prior to treatment, doctor's orders, and kept his front teeth so he can't chew anything except with the front teeth.

This is my first post but I've been reading all of your posts since early February. Thank you for helping everyone out.

I hope someone can let me know if Tom's throat will get any better than it is now, at almost 3 months post-treatment, and if the saliva is ever likely to come back. He gets the 3-month PET scan in a couple of weeks and I'm glad to have read that if it's not 'clear' it isn't really a bad sign. Also, something that has scared us is that the doctor said if it goes to the lungs, there's nothing that can be done. I can't believe this could be true.

Tom and Deb

dwoythal said:

foods to keep weight on
my husband, Tom, finished radiation and chemo/cisplatin, for base of tongue cancer, lymph node involvement, in early March. He had the feeding tube and used it along with trying to take a little by mouth each day and didn't lose too much weight. We were counting calories, and protein constantly to maintain the weight and the protein for healing. He had the feeding tube removed two weeks ago. His throat is still not good, and he can taste a little, but he's very worried about the lack of saliva. He now thinks his throat will not get any better than it is now and that his saliva won't increase either - are these likely to stay the same?

Now to the foods that worked for us: Jevity via the feeding tube. Myoplex, a high protein drink from the grocery store, was tolerable by mouth. The whole time we made milkshakes, using the Carnation Breakfast packet, 1/2 c. milk, 1 c. of ice cream. He drank four of these a day. I think the Carnation breakfast milkshakes were the best thing we found to keep his nutrition up by mouth.

Ramen soup was a good soup for him. Cheesy Potato soup mix was also good and high in protein. I bought a little book that gave the protein counts and calorie counts and we kept track every day - because he's a big man, the dietician at the hospital said he needed 220 grams of protein a day, 220 oz. liquid and 3000 calories to keep the weight good. We kept that up most of March and April and into this month.

Once the feeding tube came out, we bought a grinder and ground up turkey and chicken, added gravy and potatoes and noodles, all of which he could eat. Last night, I sauted tilapia and that was easy for him to eat. I've been buying canned vegetables and fruits and he can eat them.

The main problem now for Tom is that he had 8 teeth pulled prior to treatment, doctor's orders, and kept his front teeth so he can't chew anything except with the front teeth.

This is my first post but I've been reading all of your posts since early February. Thank you for helping everyone out.

I hope someone can let me know if Tom's throat will get any better than it is now, at almost 3 months post-treatment, and if the saliva is ever likely to come back. He gets the 3-month PET scan in a couple of weeks and I'm glad to have read that if it's not 'clear' it isn't really a bad sign. Also, something that has scared us is that the doctor said if it goes to the lungs, there's nothing that can be done. I can't believe this could be true.

Tom and Deb

saliva
Tom and Deb, my last rad trmnt was 10/22/09. My mouth was so dry it would acutally make me choke. It took about 5 months for my mouth to be moist enough for me to stop needing water all thru the night. It does get better but it takes a while. About the pet scan, my 3 month showed activity and I had another biopsy only to find out the scan was a false positive. It scared the living he... out of me. So, yes, keep that in mind about the scan. I was told it shows positive sometimes due to leftover radiation and scar tissue.
Good luck and I will keep you both in my prayers.
God Bless,
Deb

BigMike_LV said:

Taste Buds
Hi Everyone

Much like slick52 my radiation treatments were over last Monday. I was being treated around the head and neck as well as my tongue. I had 35 treatments of radiation and 3 chemo (cisplatin) Im relatively young compared to most of the folks Ive seen and talked to only 41. I responded really well to the treatment lost some weight and was able to continue working through the entire process. I can eat much better now than before but its mostly soft-ish stuff, soups, eggs, cereal etc.

I have many of the same questions?

Thanks

BigMike_LV
It is exciting that I found someone that I can relate to. I'm a little older then you, 46,
but do feel like a youngster at radiation. They followed the same treatment for my throat cancer. I finish my 35th radiation treatment on Tuesday. I will also have the last dose of cisplatin on that day. My blood count was to low last Tuesday. They put in a feeding tube, but I really didn't start using it for all my nutrition until the salavia started (2weeks)I can still swallow. Because our treatments are so similar I look forward to hearing about your progress.

RADIATION THERAPY. TASTING

HI I AM RONNY J, i GOT ON HERE TO FIND SOME INTELLIGENT QUESTIONS THAT NEED SOME INTELLGENT ANSWERS. PERFECT TIMING ON THE LAST TREATMENT I HAD 40 TREATMENNTS AND ALREADY HAVING A SMALL LESION ON MY LEFT SALVARY GLAND AND LYPHNOE THREAMENT TOO.   I'LL COSIDER TUESDAY THE FIRST DAY OF RECOVERYBAND ALL SEEMS TO BE IN REMISSION BUT STILL HAVE A TUMOR ON MY SCALP. I AM A HEART PATIENT SO ALL SURGERIES WERE ADVOIDED AND GLAD. I LOST MY SENSE OF SWEET AND BASIC BUT MY COFFEE FINALLY STARTED TO TASTE A BIT MORE NUTTY WITH HAZELNUT CREAMER. ADDED TWO TABLESPOONS OF SUGAR, COULD NOT TASTE IS  BE SURE TO BRSH YOUR TONGE TILL YOU GAG IF YOU MOUTH IS DRY SIP WATER AND A LOT OF IT OVER A GALLON CHILLI IS GREAT IF YOU LIKE SPICEY.I DID LOOSE 45 POUNDS.  EAT EVER THREE TO FOUR HOURS AND KEEP PLENTY OF WATER READY ALL TIMES. I FEEL LIKE HUMPTY DUMPTY RE LEARNING ALL GOOD HEALTHY FOOD CHOICES AND BE SURE TO LLOVE YOURSELF. i HOPE YOU HAVE A COMPANION ACTING COMPASSIONATELY TOWARDS YOUR NEEDS. GOD BLESS YOU BLESS

Wow, what a great old thread.

Wow, what a great old thread.  I would add that Trident Layers gum doesn't have the icky xylitol taste, but doesn't seem to hold together long.   Amazon seems like the best source.  I have had the funny experience of having recovered fruit and vegetable taste, and no meat or cheese, to now tasting meat and cheese but losing fruit and vegetable.  I assume that the components having worked once, they will eventually work again.  I had horrid dry mouth, including the drink, sleep, pee cycle, and then yesterday suddenly woke up not dry.  During the day it could go either way, tho chewing gum constantly seems to be helping recovery, and not just providing temporary relief.  I am days shy of 12 weeks post.

slickwilly said:

Taste buds
Hi and welcome to the discussion boards slick52. Did you have radiation to your head, neck, face ect? What type of cancer did you have? How much chemo? I am sure someone will answer if we know what you have been through. In my case I had 25 radiation treatments to the right side of my face. I lost half my taste buds, saliva glands and have scar tissue in my right sinus. This was 6 years ago and nothing is going to return. But the good news is that I am still alive. I just eat spicy food and pizza with peppers so I can taste it. Anyway if we have a bit more information I am sure someone can help a little better. Slickwilly

taste buds

I have had 15 radiation treatments one chemo treatment I have 20 more radiation treatments to go and 2 chemo treatments to go i cannot taste anything it is very hard to eat when i cannot taste it every time i try i almost trow it up i cant swollow it any help on this Thanks

taste after radiation5 rad treatments

I am having trouble picking up some of the weight I lost after SCC Tonsil cancer- 35 rad treatments and chemo each week.

Mostly i think this is because the carbs which usually make me fat- Baileys Irish cream, chocolat cake, pasta, taste terrible. My sweet taste is entirely gone and dry food like cake and bread turn to cardboard, too dry to eat.  I put vinegar on everything, sour cream too and keep a glass of water handy- a bite of food, a sip of water.  I am 3 1/2 months from end of treatment. GOOD PART- no pain, and I am alive! I may have to start drinking a supplement but oh, the texture and smell make me gag! Suggestions?

mmalar97 said:

I need your advice
Rose EM: You mentioned that there are not too many things that you can eat. Well, I turned 62, and was pleased that I had lived 5 years past total prostate cancer. Three months later, I was diagnosed with tongue and neck cancer. I had canser taken from my tongue(a donor patch from my hip was placed), and I had 1 lymph node removed from my neck. This was Dec 15, 2009. I started 30 double doses of radiation 6 weeks later. It is now early May 2010. There is one spot below the tongue (deep) that still causes great pain when I try to eat. I can eat eggs fried with bacon( I can't chew the bacon, though I love it). There are 2 to 3 other soft things I can handle. The doctors told me that the sore is nerve damage, and may never heal. I have lost over 40 pounds so far. I needed to lose 30 pounds before I was diagnosed, but now, I can't maintain my weight! I am losing 2-3 pounds a week. Do you have any suggestions for food. I have always loved cheese cake! Michael

Help with food

I had half of my tongue removed in 2010, but my cancer returned in 2014 and I had chemo and full dose radiation on the right side of my tongue.  My taste buds have been destroyed and my food tastes terrible. However, life goes on and we find ways to survive. I drink 3 smoothies each day. I put in 3/4 cup of mixed berries (raspberries, blue berries and black berries) that I get from Costco, 3/4 cup of plain yogurt, 1/2 cup of SoBe water (0 cal Black and Blue Berry flavor), 2 teaspoons raw sugar, 1 scoop of MRM egg white protein powder, and 1 tablespoon of unrefined coconut oil, melted. I put all of this in my Magic Bullet and  mix it up. I hold my breath and drink it down as fast as I can. Between swallows I drink cold water. I have been doing this for over 4 years now. It has worked quite well for me. I miss my enjoyment from food, but I am alive and I love my family. I also drink one "Boost Plus" everyday. I use the MRM Protein Powder because it is the best protein on the market. I get vanilla. It is very important to get 20 milligrams of protein with each meal. Fats and sugar are the only 2 food items that will help you gain weight. You may need to dring more than one Boost a day. You could also add more coconut oil to the smoothie. I also use the high fat yogurt. I too had a nerve in my tongue that was trying to regenerate. My doctor took the nerve out of my tongue, ptoblem solved. Good luck to you. Let me know if my suggestions help. Remember, more fat or Boost if your weight is falling.

Skiffin16 said:

Taste Bud Recovery & Dry Mouth
Thanks Hondo,

I'll definitely give the Stoppers a try.....

LOL, I actually just changed that original photo to one of me on my Hewes Redfisher with a limit of Pompano that a friend and I caught in Tampa Bay. I live fairly close and fish there often. The other was on another friend's Maverick Master Angler. We were fishing near the Skyway Bridge for grouper that day at the mouth of Tampa Bay.

Any day that I can get out fishing is a great day....but also right now any and every day that I'm a survivor is an awesome day.

John

John......Tampa?

Hi John, May have posted to you back in 2016 when My journey started.  I live down in Sarasota, My son is up in Clearwater.  Where did you get your treatment done?  Thank you, how are you doing now? Lisa

Taste Buds and Salivary Glands

Hi Guys

I live in Western Australia and have not been able to find a group like this.

July 22 I started 35 days of Radiation and 4 courses of Chemo as I was diagnosed with Right Tonsil and tongue Cancer. The tumour was stage 4 and approx 5 cm across the back of my tongue. My treatment finished Sept last year and atm I am Cancer free for the time being.

I have not eaten any solid food since Jan 22 and lived on Sustegan and Nestle protein dinks. I had a fear of chocking and swallowing. My taste buds are shot and food tastes disgusting. I don’t like the taste or consistency of food in my mouth or in or on my teeth😔 I am trying to eat though. I do not get the urge to eat or feel hungry either so I have to set the alarm on my ph to eat.
my saliva glands are shot too and dry mouth most of the time but find Xylimelts at night really do help. My throat hurts after talking and find I mainly sit at home and message rather than talk to people.

Any encouragement or advise anyone could please give me I would be very grateful for.

I just feel so alone and I’m willing to try anything that has worked for others.

Thank you again for any hope offered.