Taste Buds - when will they return!?

grahammj13 said:

just wondering
I had scc in my left tonsil and had 30 imrt treatments. I went from 164lbs to 125lbs. I have been done with treatment for just over two months and am still having a hard time eating most solid food. At this point I have resorted to high calorie protein drink mix. I guess the worst part is no saliva to keep throat moist and to aid in swallowing, and this is really affecting my quality of life. Does saliva and taste come back? And to what extent have you experienced this recovery. I know everyone is different but at this point any news in this area wll be appreciated.

mjg

JGE said:

Taste / Saliva
Long time lurker, 1st time poster. 41 YOA, Left Base of Tongue, 2 lymph nodes, 30 IMRT, 3 doses of Chemo (high doses of each) Last treatment 11/15/2009.

The taste will get better. At 4 mos I would say I have about 75-80%. At 2 mos I had about 40-45% and I thought i would never be able to live that way. At the end of treatment, I had no taste at all. I will say it again, it will get better. One friend at 8 mos is about 85%. His friend at 1 yr + says he is almost 100% but likes different things than he did before. Also, your saliva used to "rinse" the flavors around your mouth and the enzymes in your spit started breaking down the food right away which helped bring out the flavors. We no longer have that.

As far as saliva goes, this definitely varies much more than the taste thing. First of all it depends on the type of radiation someone gets. IMRT allows the doctor to "aim" the radiation much better than other types of radiation. Years ago they just nuked everything all around the target area. Besides IMRT, it depends how much effort the radiologist takes to try and spare you some salivary gland function. They are trying to balance between insuring they get all the cancer and leaving you with some spit for quality of life.

For me, my saliva has gotten better than it was 2 mos ago. I would say that I have gone from about 25% to about 35% even tho the radiologist said it was damaged and wouldnt get any better. The ENT on the other hand said it would get better but would take a year. A fellow I have come to know that is beyond 1 year says that his did get better as time went on and is actually "pretty good". Another guy I know at 8 mos seems to be worse than mine. Really varies.

I can tell you this. A couple months ago I didnt think I would ever be able to live with the sore throat, the dry mouth and especially the lack of taste! All of these things have gotten dramatically better and the taste is tolerable for sure even if it doesnt get any better (which I hope it does). The sore throat is all but gone unless I eat a big dry meal. The saliva is probably the biggest issue that will most likely remain for the rest of my/our life.

Milk is better than water with food because it is thicker
Biotene toothpaste and mouthwash is good (no "foaming agents")
Biotene GEL gets me thru the night without water
Lots of sauces and condiments with food
Less bread and crackers
Some say Zinc supplements help with taste buds
Less talking helps keep the moisture in your mouth
Breath thru your nose as much as possible
Gum with Xylitol helps when excercising or breathing heavily
Humidifier in your room every night
Chap stick for dry lips due to dry mouth

Hope this helps!

RoseEm said:

Mine changed - it's been 15 months since last rad
My taste hasn't come back, but I think the combo of my radiation and chemo just permanently fried my tongue. Things I used to love - especially melons, strawberries are just not close to tasting the same. I also pretty much exist on Scandishakes, Ensure - but do enjoy some "real" foods. I'm a little different, though, in that there was a lot of damage to throat muscles, epiglottis (sp?), etc. I have many "forbidden" foods, which makes it slim pickings. "Eating" to me is the same as "time to take your medicine." I've gotten used to it. Kind of like giving up smoking or caffeine...tough for a while, then it just becomes my "new normal."

I know lots of people whose taste came back completely within a couple of years.

CherokeeChick said:

taste buds
As I was reading down thru these posts I actually smiled to know that there are other cancer patients out there that are goin thru EXCATLY what my dad has. he was diagnosed with squamous cell cancer (tongue cancer) december 4,2009. My dad being 51 has NEVER NEVER NEVER been sick in his life, he quit smoking 30+ years ago and quit chewing april of 2009,come may 2009 he had a sore throat. finally talked his stubborn butt into goin to the family doctor in august,she diagnosed him with strep throat from august-october,when i went to the same dr in october for my bronchitis i told her he was not doin better, that is when she "referred" him to a head/neck specialist. That is when the CTscan showed a 3cm mass on the left side of his tongue..toward the back. He got a port and a feeding tube late December. Come January 25th he had his first Chemo and radiation and he went 5 days a week for radiation and had 3 chemo treatments. He has lost his taste buds and just decided he dont want to eat within the last week. He has lost about 20 lbs since December. His radiation dr felt his throat a few weeks ago and says the mass is SHRINKING (THANK GOD) but still wants him to have a few more radiation. as of april 12th we should be completely done!!! I was just curious as to what he should do about taste buds? and i am prayin for the all the cancer patients on here that i have read about. Cancer is the most scariest thing in the world and even my dad said he wouldnt wish it upon his worst enemy!!
take care and i hope to hear more from everyone on here!!!

thegirlfriend said:

taste
Im sure your dad feels that anything he puts in his mouth is similiar in feeling to
snacking on cement, cardboard, and other such things. My boyfriend has been out of treatment, lets see, on Friday it will be 22 weeks. He has a little bit of taste, but within 30 seconds of chewing or trying to suck on the flavor of something, it turns into, cardboard or sand in texture.
Its amazing what the radiation zaps do to a tumor. I remember his tumor getting treated and within 3 days, it had shrunk by 1/3!! So yes it is the best we have, but it also kills alot of taste ability and saliva. For many as you can read, it returns almost all the way or all the way. Everyone is different. Your dad MUST keep up whatever he must, to keep getting nutrients. If he loses too much weight they may stick him in the hospital. Dehydration is a biggie. After fat loss, then you lose muscle mass. But I know he just doesnt feel like eating because the treatment has just wrecked the joy of eating as well as the ability to properly eat. This is temporary as I am being reassured on this board.

These last 2 weeks may be the hardest on your dad as they are for many. Tell him to look for the light at the end of this tunnel. Its there. Then he can concentrate on recovery.

best of luck cherokee

Scambuster said:

Docs Opinion
Hi Again Dennis.

I was sort of where you are and know it is not a good place. While I haven't a conclusive nor definite answer to your questions, I can share my story.

Post treatment about 2 weeks out, I was still living through my PEG and in bad shape. What turned me around was getting prescribed new medications. I was on Morphine and Vicodin for the pain, couldn't really eat, no taste, heavy mucous and very very depressed. I could see no end to the suffering and it disturbed me to the core. I couldn't work. I couldn't even leave the apartment.

I was actually admitted back into hospital for about a week. The Onco Docs and nurses who knew me well almost shat themselves when they saw me and the condition I was in. They sent for the shrink. He was nice guy and quickly established I was very depressed. No surprise in hindsight though. At the time I had no idea.

They put me on a mood stabilizer, an antidepressant, and an anti-anxiety pill + Lyrica which is mainly for pain. I had my first night sleep in nearly 4 months. I immediately settled down and felt better and saw a glimmer at the end of a very long tunnel. It still took a while before I ate and I still struggle with food, but when the other things in life start to improve around you, then you place less emphasis on the crappy things so in a way, while everything now is probably crappy, you will start to identify some things improve.

That could be your energy, your sleep, the pain, the reduced mucus, your voice, your appetite or just walking out into a sunny morning and enjoying a sit in the garden.

My good periods at the start were going to Starbucks with my Laptop and reading a book and slowly slurping down a Hazelnut Toffee Shake. Not the best health wise but it was something I could get down and gave me some calories. i downloaded and read Lance Armstrong's book called "It's not about the bike". I recommend it. I looked FWD to my couple of hours there with a 15 minute walk either to and from (I actually detest Starbucks but they have nice comfortable chairs and WiFi). I noticed each week that I moved a bit easier and stayed longer, and even ordered a second beverage.

I must emphasize how the importance of getting good sleep was for my recovery. Most of the 4 pills I took each night helped the sleep. I still don't know how I went from Morphine and Vicodin to these other meds without any need for pain killers. I still take the meds but have reduced the doses and am slowly weaning off them all.

I finished treatment early october. By early Feb i was back at work full time and now I feel great. I swim laps and do light work outs and have great energy. I take a bunch or supplements and watch my diet. While I don't enjoy food in the same way, i find things that suit me and get along fine. I was also about 210lbs and now am a trim 165. Not much gain but I feel fine and now will work on rebuilding the lost muscle.

i also told myself over and over every day ("I am getting better..I am getting better....I am getting better...") Your mind need to be convinced and it can help your body take on the signal.

You will get through this Dennis, Have faith and I hate to say it, but patience. Work on the small things but please talk to your Docs about feeling so low as they can probably help you out.

Hang in there.
Scambuster

Kent Cass said:

taste buds return?
Unfortunately, they have not for me. But it's not all-bad. Sensations, good and bad, are the rule of the eating day for me. 17-months, now, with a year after the last rad. Something about Sprite/7Up is most excellent. A can of Roadhouse Chili for lunch at work, eaten very slowly. That, too, is excellent. However, French dressing on chef-style salads- the most excellent. The chili and dressing may be extremes, but the taste sensations are okay with me. Nibbling on anything barbeque also is. Thing is- candy bars and less radical food stuffs- it's like there's no taste whatsoever.

And a big ditto from me for Scambuster's post, Kathy. I might trump him on seniority, but he has been far more pro-active in letting it be real, and knowing what's what. His words are to be heeded by all...I was Morph and ice during weeks #2&3 and #5&6, with Vicodin always available, but never used when on the Morph. 1/2-tabs of Xanax did help with the attitude thing, but never asked my Dr. for a refill after the treatment was done. Did continue with the Vicodin, though, and they do play a part in the attitude thing. Hope may be the keyword. Simply put, the Morph scared me. It took me where I needed to go in the worst of times, but it was not a place I wanted to be- a place beyond my control. Morph did serve a critical role to the positive in my endurance w/treatment, but where it takes one is the exact opposite of why we go thru treatment- to live/survive. Maybe it is not enough to say that surviving the battle is cause enough to regard one's own life as worthwhile, but the battle, in itself, does tell us all that we cared enough about our life to fight and win that battle. And, when the dawn happens over the final battlefield, there comes a time for a reckoning with oneself. Yes- Strength and Honor during the battle, but what about the time after?

The best answer to that little question can be found in how the experience changes one. In remembrance, and the mindset during the battle, there is most certainly a lost-type area after the celebration of victory has waned. The struggle continues with us all, in that things are not as they were before the C came into our lives; however, a void replaces the daily rads and often-Onco visits, and that void must be recognized for what it is. Resuming one's life in whatever capacity is it's own battle. We all know that as fact. And it is a large struggle. The best we can do is find the reasons to resume that life, latch onto those reasons, and live as the better people we are when we emerge from the battle with success. A minor battle replaces the larger one. And, though it can be just as difficult, perhaps due to the physical changes of post-treatment, the minor battle is the battle we fought the big fight for, and we must seek to make that big fight worthwhile. The seeking finds resolution within oneself, and one's Belief(s), role in life, etc. It is there to be had for all of us- WE ARE SURVIVORS. And, we are H&N- 99% of the world's people are "easy street", compared to where we been. Yeah...

Scambuster, I take my hat off to you, Brother, for how real you are.

Believe

kcass

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 hisband is 8 treatments into radiatin for SCC of the larynx and says everything tastes like garbage - even water. Can you tell me how long this will last? Thanks!