CSN Login
Members Online: 4

Goodbye to my taste buds.....

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

Goodbye to my taste buds.....alas they are leaving. It happened so suddenly, I am 10 days into rads I thought maybe just maybe I'll be one of the lucky ones. I even prayed for it, though I know it is selfish. I was eating my usual foods when I realized that I had an extremely sour taste at the back of my throat. I tried to ignore it then realized when I ate my yogurt that my taste had changed. Anything even remotely sour has become unbearably sour, just like that. No notice, nothing, just boom, gone. I drank an extemely sweet cherry cider and the only thing I tasted was sour. I'm so sad! I also notice that my sense of taste has faded, foods aren't tasting as good. Last week my kids and I went on a shopping spree at Trader Joe's. I filled my basket with goodies that normally I won't buy at least not in that quantity. $70.00 of tasty junk. I felt so guilty I explained to the clerk quietly that I would probably be losing my sense of taste soon, hence the binge. When I left she said don't feel guilty enjoy every bite, which I did. Food has been my cure all for so many years and now it is leaving. To tell you the truth, I'm feeling pretty devastated. I know things could be worse, I hear it all the time from well meaning people, but food has gotten me through some really rough spots in my life and now I won't have that to turn to. Also a new turn of events, when I swallow the left side of my throat feels like I'm swallowing sharp rocks, very painful. I'm meeting with my doctors on tuesday and I'll hear the usual, this is all normal, blah, blah, blah. I will become positive about this food thing somehow, but right now I feel like crap.

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Go ahead and have one - you deserve it. You might still be one of the "lucky ones" and have your taste buds come back faster. Doug's started to recover during the last 2 weeks of radiation, when they switched from broad area to more targeted radiation. About a week after all radiation stopped, he started to mention that he could taste strong things, like coffee. We were at a party (our first) the other night and they had crabby nachos - he could taste the crab!

He never lost it all - he could still taste the awfulness in the liquid supplements we had to rely on after the worst 3 weeks (the ones in which he lost 35 lbs).

Right now, he still finds things taste funny, which gives him a free pass on turning town his veggies (a 5-year-old's dream!).

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

So there is hope!I was feeling particularly down yesterday. It started when I tried to eat potatoes with catsup and all I tasted was sour. Then this new rock swallowing pain started. I sometimes feel like I just am going to give up and say screw it, I've done enough already with surgery etc. But radiation decreases my chances immensely of a recurrance so I will suck it up and get it done. Thanks for your thoughts, it always helps to hear anothers journey through this weird world of ours. Shelly

D Lewis's picture
D Lewis
Posts: 1531
Joined: Jan 2010

Hang in there gal. You CAN do this. I lost my tastebuds, and pretty much everyone else here lost their taste buds. They DO come back. I'm six months out and pretty much back to normal. Sweets are still changed. I can taste them, but differently. I cook with butter and olive oil exclusively now. Any other type of oil just has an off taste. Wine has been the slowest to return, as the taste is so complex. Otherwise, good to go.

Speak with the doctors about your pain levels. They will know how best to help you. There are several options available.

Deb

rozaroo
Posts: 667
Joined: Apr 2010

I lost my taste in a flash lol. I was eating fine & the next day everything was sour. I am happy to say it is mostly back now. Still working on chocolate & beef is yucky lol. But at least I can taste now. Just do what you must do to keep weight on to fight the battle. Concentrate on that. I let the eating part drive me crazy. A total waste of time as it
comes back when it pleases. Make sure to drink water etc. Hang in there Shelly.

MarineE5
Posts: 751
Joined: Dec 2005

I would say that I lost my tastebuds in the first week. Things tasted like cardboard (food )and aluminum ( Liquids )throughout the radiation treatments. Roughly 4 weeks after the treatments, my tastebuds started to wake up, slowly, but woke up.

Have you tried the salt and baking soda solution for rinsing and gargling your mouth and throat? I used this solution about every 30 minutes and it got me through the treatments without any pain med's until about week 5 when I started taking the pain med's that the Doctor perscribed.

The solution is 1 teaspoon of salt and 1 teaspoon of baking soda in 1 quart of room temperture water mixed up and use as needed. I increased the dosage to 1 tablespoon in week 3 as the solution didn't bother me and salt is a natural healer of sores.

My Best to You and Everyone Here

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Man, I remember the pitiful search for things I could still taste. Your potatoes with catsup was sad for me - I LOVE catsup, and it that is one of the foods that took longer for me to be able to eat again. I did the "try stuff every day to see if I can taste it" method. I know what you mean about food being your cure. Same here - my pacifier, distraction, celebration. I was surprised to find one day that I couldn't taste spaghetti sauce, but could taste chicken. What? I didn't have the everything is sour so much as the everything is fading. Tricky for me to find foods with a strong flavor level that weren't spicy. Some refrigerator pudding with a cinnamon roll flavor was one of the last things I could taste then. By that time, a real cinnamon roll was out of the question. Before treatment, I joked that once everything lost its taste for me, I'd live on health food. I know that knowing the taste will come back is little consolation for losing the taste now when you know you need to get calories in. In a few weeks, I want to be reading what your victory food is (first successful food you taste and can eat and swallow and hopefully enjoy). I ended up doing lots of nutrition drinks and smoothies, because I could get them down the fastest and easiest.

3Mana
Posts: 829
Joined: Aug 2010

HI,
When my husband had cancer they told him not to eat with silverware, but to use plastic instead. It seemed to help a little, so try that. Good luck!
"Carole"

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

Thank you all so much! I was and am having a few pity parties, but luckily not too many. You people on this board are helping so much, and I know you know what I am talking about. I am going to try the salt and baking soda, my mouth is getting so sore. 11 treatments down 22 to go. Swallowing is becoming difficult. Saliva producion reducing. All the same stuff you have all been through and survived. I know I will get through this and helps to know that I am not alone. I LOVE YOU ALL!! Shelly

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

Taste Buds

As Arnold Schwarzenegger would say, I will be back; they too will come back when the treatment is done. Our bodies have an amazing way of healing it self Shelly, something God put and design in to us for when we need help. I know about the crap feeling and good and bad days they are all just part of the treatment and you will get over them and be you again.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

That sucks Shelly. Mine went a little faster than yours though I still taste all the stuff I didn't like to begin with. My mouth was actually pretty beat up at the end of week 2 and solid food was just so painful I switched to smoothies. Then my mouth completely healed up. Every time I try a solid food the sores come back. I realized that my mouth is just tender and the sores are mainly from the solid food cutting it. Same with my throat. Sticking to smoothies really diminishes the pain. Like you I've come to realize that so much of our joy in life as humans is tied to food and eating. A bit depressing for us if we let it be. The food focus now is gratitude. And calories of course. I love hearing from everyone that it's temporary. I'll let you know when mine come back; you let me know when yours do. 11 down is 1/3. That's awesome. I'm on 25 today. 10 more to go. Mouth is dry, neck is red but hanging strong. You're hanging strong too. Try not to wait too long to take care of pain. Docs should be able to help with that any time, 24/7. Pain takes too much energy that our bodies can't spare right now. Peace and strength to you Shelly.

Bob

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Yep it sucks. You are entitled to a pity party. I lost my taste the first week. I started 4/6. I remember Easter was like that weekend and I ate like a maniac because I kept wanting to just taste something, anything I was eating. :( By the second week my mouth was getting bad and I ate my last meal on 4/19 I think. It was a Sunday and I remember what I ate.

My taste is still messed up. Certain things still burn and I cannot tolerate a lot of foods yet, but I will say the plastic fork and spoon trick works. That is basically all I use. They are also smaller for my mouth that doesn't open very wide any more. My grandmother has the biggest silver ware I've ever seen. The tablespoons are like serving spoons. No can do. :)

Hoping you have minimal side effects and that they are manageable for you and that your taste will come back quickly.

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

Yep, going to have to switch to smoothies really soon, but without yogurt. For some reasone I'm hypersensitive to sour, so yogurt tastes like those super sour candies. Anything with vinegar or even a tinsy bit sour. Also spice, I love spice and now can't touch it. Everyday it something new. Salt is leaving very quickly, going to have to watch that so my blood can still run freely through my veins. The pain is getting pretty intense in my throat, feels just like strep throat, which if you've had it is debilitating. Everyone here all know exactly what I'm going through, it is so awesome to know you've been there done that! It seems everything is hurting my throat so tomorrow I go to my main oncologist Dr. Eisele, then see the rad onco in the afternoon. I'm sure by the evening with meds I'll be feeling better. I've been doing what you all tell me. I gargle with baking soda, the salt hurt too much. I used a plastic spoon, etc. I'm really listening and you have no idea how much I appreciate all of you. I don't know any of you personally but I really wish I did, I'd love to give you all a huge huge, (sniffle). Thank you all so much for listening patiently. Love to you all and Happy darn Holidays!!!! Shelly

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Shelly,
A really sore throat that comes on suddenly is a sign of thrush. Hopefully your doc takes a good look at your throat and treats for this or rules it out. I've been thinking about you and hoping you're doing ok. Go get em today. Take good care of yourself.

Bob

mixleader
Posts: 267
Joined: Oct 2010

Hi, Shelly. Yes, I am sure that most of us here feel your pain and frustration at having fried taste buds. I guess that most of us just never really think about how important this is to overall happpiness. It is indeed tough, but you can do it. I know that everybody is different, but I lost almost all my taste around week 3 of the radiation and I had most of it back around 4 weeks after treatments. Like most, my throat got very sore and swollen and I had to eat mostly soup and yogurt and Ensure. I am now about 3 months post rads and most things taste just fine. I still cannot handle even mild salsa because it burns my tongue, but all in all, I would be happy even if it does not get any better than it is now because it is indeed close to what I had before. So, hang tough and beat this thing. Life can be very good indeed.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Kingcole,

Hang in there it comes back. I'm 4-5 months post rads, had 8 weeks of rads and 6 weeks of chemo. I had a coke during treatment, it tasted like fizzy water. It comes back and man did I miss my food. It was hard at first, I had a chicken,gravy and biscuits during treatment. You know, I could smother everything in gravy and slurp it down. Man, I could smell everything and it smelled oh so good, but taste was like "crap" and that was a sad day. Enjoy what you can while you can because it will go away, but remember it is temporary. The fun part after treatment is learning what everything tastes like again :)

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

shelly,
I am so sorry to have not been online while you were struggling. I went through the same thing! My sense of taste was lost so very fast and it made me so sad! I have always loved food and I have loved to cook. It has been hard to want to cook and want to eat, but the foods taste off, then when I am able to eat half of the time it hurts so bad. It was worse during radiation and it is getting better now. I have always hated milk, but I found that it was cool, but not cold and it helped me get some calories in when I was struggling to not lose too much during treatment. I still drink a glass with every meal, and some in between. I also have to have a glass of water to wash the milk away, but I had a very happy moment last weekend...I was able to taste chocolate (not completely, but some sweetness was such a change!). every day I try something that I have always loved, just to see how it tastes. most days it tastes horrible, but I know I like it, so I keep trying. don't give up...change how and what you eat now, but find what will work for you. I ate a lot of overcooked pasta with homemade alfredo sauce...tons of calories, I could make up a big batch of the pasta, keep the sauce in a separate container and then finish cooking the pasta and adding in the sauce. I modified the easy recipe I had by not adding the pepper (it burned too much) and adding more cheese (I had to add enough to make it taste like anything). I had found that at least for me, that if it was milk based I could taste it more than those items without milk in them. soft drinks taste like I would imagine battery acid would taste like, most chocolate tastes like cocoa powder, I can taste metal when I use a metal spoon and if a food has any spice in it...all I can taste is the spice. despite all of this, it is getting better each day.
hang in there...this is a tough time, but you are doing it to clean your body of the possibility of cancer coming back. You already made it through a major surgery, you made it through your first day of treatment even though you were terrified, you have made it through each day of treatment so far...you are a strong woman. strong women can overcome difficult obstacles...have a pity party, but then get up and find what will work for you. you are almost 1/3 of the way done! Hang in there! This is but a temporary setback and it has thrown you, but you will overcome it!
hugs and prayers!
elizabeth

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

I've missed your posts and was actually worried about you! (I'm a bit of a worrywort) I hope your doing well. Milk is a good one, but right now everything hurts my throat, like swallowing sharp knives, hot or cold, doesn't matter. I LOVE to cook also. It is rough. I made potato, broccoli and cheddar soup tonight and had to have my daughter taste it to make sure it was salty enough, I'd have added 1/2 a cup! I watch Food Network religiously, I even subscribe to the magazine. Rachel Ray is my god (just kidding) but you get the picture. I have always made a big deal out of the holiday meals, cooking my arse off. I've already informed my husband this year will probably be different. He might have to take over a bit, we'll play it by ear. This is only one year out of many more to come. I just tell myself that and I'm good. Next year I'll really blow it out, this year will be what it is. I have to remember to say the serenity prayer, Grant me the serenity to accept the things I cannot change, etc. It always helps. So anyway enough of my babbling, I'm glad your back!! Love ya, Shelly

ratface's picture
ratface
Posts: 1238
Joined: Aug 2009

Hi Shelly

You can still feel good about eating even if you can't taste anything. During last thanksgiving my wife made some wonderful Italian meatballs and I was exactly where you are, agony if anything touched my tonsil and could not taste a thing. In the blender on "puree" with that damn meatball and then in a syringe and down the feeding tube with the whole family eating meatballs next to me as I shot mine down the tube. You don't have to be denied and it felt great!

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

I haven't been on lately, not because of my health, but due to my sick kids and husband! they have come down with the "crud". I have been trying to do more and more each day, but I end up so worn out that I just sleep for a couple of hours at a time. I am healing up very fast...never fast enough though!
I am also a huge food network fan, and now I have the cooking channel! I hate not knowing if my taste buds are accurate, but it could be worse! My husband thought I was a glutton for punishment when I watched all of the cooking shows while i was healing up...I would even record some so I could rewind it if I fell asleep! for me it was a way to think about what I wanted to eat when I was able to. sometimes it would make me cry, but mostly it just made me push that much harder to not be on liquid. tell your doctor about your pain and demand stronger pain meds. I understand about the pain, but please try to drink water or something to help keep up your swallowing!
I am already planning next year's thanksgiving and christmas food! we may go to see relatives, but I intend to make a big turkey dinner with all the fixings...and don't get me started on all the christmas goodies I intend to make (and eat) next year! :)
this year I am just making and sending them out the door...but at least I get to see everyone around me enjoy what I am making...even if I have to follow a recipe exactly and have to have a taster tell me if the seasoning is okay. It won't be great...I add my own spin to recipes. I was very grateful that I had previously figured out the amounts of my favorite foods for my sister when she got married...I was able to pull out my recipes and although I don't usually do more than add a bit of this and that, at least I knew that it would taste good! I used to season and taste a bunch of times.
it was weird to be told the other day that I could add as much salt as I needed to my food...I can't for my mom or husband...they both have high blood pressure. (I grew up in a home where we rarely added salt to food). so I added nothing to theirs and told them they had to add it themselves...my mom told me the mashed potatoes were the best she had ever had and she asked how much salt I had put in...when I told her none, just butter and half and half, she said she wished she had my recipe years ago...it would have saved her some high blood pressure readings after the holidays! meanwhile, I was adding salt to everything...couldn't taste it, but I was under doctors orders to increase my water and my salt!
In case your doctor didn't already tell you, your immunity will be down...you may get every cold you are in contact with...I have! I just hope I can avoid my baby's current cold...he has a high fever, a sore throat, ear infection, and a croupy cough! I have been sick since about half way through my treatments...2 weeks ago my rad oncologist said that it was viral, since my antibiotics were not working, but I think I am getting a different cold...feels like a secondary bacterial infection...I will be seeing a doctor about it asap!

otherwise, I am looking forward to Christmas! everyone in my family keeps asking me what I want, it is so hard to explain, that just having them with me is all I want this year. to hug my babies, to snuggle with my husband, to be annoyed by relatives, to have to make my own dinner at my in-laws (she way over cooks food...I wouldn't be able to get any of it down!), to hand write christmas notes...not because I am a glutton for punishment, but because I want to write something personal this year, to be able to tell those I love that I love them...that is all I need. but when my husband said I had to tell him one thing I needed, I told him I could use an immersion blender so I can make some great soups! I am getting a little tired of transferring food into a blender, then straining it through strainers! then he asked what he could get that would make me smile...so I told him I want him to take both of our older kids to chose a gift for me...it is actually 2 gifts in one...quiet time by myself and I love seeing what the kids think I would like! My oldest, Logan, will buy either something extremely sentimental or a toy he can play with himself. my daughter, Alyson, will buy something either pink, purple, or shiny! my youngest, morgan, is still too young to buy anything (he is 10 months old tomorrow).

anyway, I hope you have a good christmas...and an over the top, amazingly awesome one next year! :) I am praying for you. HUGE HUGS!
elizabeth

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

I'm so glad your healing up. I was wondering how your were. Your so lucky to have little ones, it makes christmas so much more special. Mine are Ceara 16 and Teague 14, girl and boy. Soon to be 17 and 15. They don't want anything to do with the holidays anymore, really except get presents. I used to love watching their little face lite up. I'm doing ok went to see my onco surgeon today, he said the pain in my throat is mucositis. Going to see my Rad onco at 4:20 today. Need to get this healed up, it hurts like hell! Well take care big hugs to you too. Love ya, Shelly

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

yeah, I know all about mucositis...mine was on my tongue and along what was left of the roof of my mouth and my upper throat. Everything hurt. I hated to drink anything and even breathing hurt...my nose got extremely dry. I had to use saline in my nose all the time, and I used my caphosol 9-10 times per day...it really seemed to help with the mucositis. and I was at about treatment 12 when they switched me from lortab elixer to morphine (i mixed the drops into extremely watered down apple or white grape juice). wishing you the best...and some good meds to take the pain away...or if it doesn't take it all away, to at least take the edge off so you can rest.
Hugs!
Elizabeth

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network