Hi all. Currently finishing up my 4th week of IMRT and feeling really alone and discouraged. Though the sores in my mouth and on my tongue have only lasted about 2 weeks and started to heal and I'm no longer in pain my taste is completely diminished.

I went into this weighing a healthy 150lbs at 5'7" and lost about 10 lbs due to 3 surgeries, regained about 5 back and am now down to about 130 because the only thing I can stand to eat is oatmeal.

I'm wondering if the sores are going to come back again? I don't want a feeding tube and I'm going to try ScandiShake which has 600 calories because it seems one of the few things I can taste (somewhat) is chocolate along with coffee and milk. Things like carnation instant breakfast and ensure are so thick they make me cringe and make my saliva "ropey" and unmanagable.
I'm also feeling very depressed about this whole lack of taste thing. I assume I'm not the only who loves food. Eating without taste leaves only texture which makes me nauseous and I might as well be chewing on cardboard. I just can't do it. It's miserable. I'm always hungry and trying to find ways to take in calories through liquids. I frequently try foods and am very disheartened when I taste nothing. I'm afraid I'm going to diminish to nothing and live miserably until things go back to normal - when will they go back to normal???

I feel as if my boyfriend - though I know he's trying to be supportive doesn't even come close to understanding what I'm going through. Apparently he thinks tough love will get me to eat or that time when he was little and sick and couldn't taste food for 3 days compares to what I'm going through. I'm scared I'm not going to get my taste back and that food will never be the same again. Sorry if this was all over the place and confusing but I have had nobody to talk to this entire time and just found this message board. Please help. :-/

Welcome to OCF! Now that you have found this site, you are no longer alone! You are now among others who understand what you are going thru and will help with advice or just to lean a shoulder to cry on. Dont worry, we will be here for you! Its kinda like our own little private club that nobody else quite gets except other patients and caregivers. Oral cancer is so much harder than other ones because it affects such basic functions like eating, talking, kissing, drinking, etc.

About your mouth sores. Unfortunately radiation continues working even after you finish the treatments. How many tx do you have? Try rinsing your mouth with 16 oz warm water, 2 tsp baking soda and 2 tsp salt. Do this at least 4 times per day. Swish for up to 30 seconds and spit it out. If the salt burns your mouth, cut it down to 1 tsp or omit it completely. Salt helps to heal so its preferable to have in in the mix.

Now is NOT the time for weight loss. Most doctors recommend to not lose any weight at all even if someone is overweight when starting out. It means your body is fighting and burning up way too many calories. This will quickly weaken you and if you dont get enough nutrition and hydration it can lead to major problems. The end result being hospitalized. Push yourself to get a minimum of 2500 calories per day and 48 oz of water, do this EVERY single day. Dont think that its ok to make it up the next one, that will lead to a cycle of playing catch up and will be detrimental. Even more calories up to 3500 is ok! Adding some high protein powder will help speed your healing capabilities.

I know its a long road. Hang in there, Im with you every step

Thanks Christine. I have been doing the mouth rinse you mentioned as well as wearing my fluoride trays during treatment. I have 11 more treatments left if you count tomorrow (Friday). 30 total. I'm really doing my best as far as calorie intake but it has been a struggle. Nothing is appetizing and I just don't want to eat anything I can't remotely taste. It's hard to swallow and makes me want to throw up. I realize this probably sounds juvenile and I should really just get over it but...my attempts so far have been futile.

Marie

Water down the thick nutrition drinks. I drank alot of yoo-hoo. But I also had a feeding tube to use for the formula. I lost 65 pounds and almost 4 years later I still havent put any back on. Eat, even if you have to force yourself! You do NOT want to end up hospitalized for malnutrition and/or dehydration. I know how horrible it feels, it happened to me. I felt so sick I really thought that I was beginning to die. Your taste will be gone for probably 6+ more weeks. It will return but it takes time. Please let me know what you need help with and I will make suggestions for you. I know how hard this is but you can do it!!!!! If I can do it being the biggest wimp out there then you can too

PS... If it gets too hard to get your nutrition in you may end up with a feeding tube. They do have nasal tubes which are very easy and more temporary than having one surgically implanted.

You poor thing!! You can and will get through this. Try watering down the shakes like Christine suggested. I also completely agree with you on the Skandishakes. They definitely taste better & you have control of the consistency.
Ask the nurses at your facility if they are able to give you a mouth irrigation. I had one everyday. Admittedly, when things were at their worst- it didn't do as much good- but it sure felt great to get that junk out!!! Drinking water, the salt & baking soda rinses, and frequent brushing & gargling also helped.
I am two months out from 6 weeks of IMRT. Please believe you when I tell you there is sun beyond the clouds.
You will persever & get through.
Take good care!!!

You are no longer alone. We have found amazing support on these forums. Stay here and vent when you need to. We ALL understand, have been there or are there now.
It's not being juvenile, it's being real. But, you have to force yourself or get the PEG. Nutrition is a MUST or, like Christine said, you'll end up hospitalized!
Hang in there. Many people who have not been through this do NOT understand. How could they? Did you before it happened to you? We sure didn't. We had sympathy when people said they had cancer. Now we have empathy. We GET it! It SUCKS!!! Try to be patient and explain how you feel to him. Have him read some of these forums.
Hang on and keep talking to us!!
Blessings,
Kathy

Hey there .. I was where you are almost a year ago, I actually started rads march 18 2011. Had the same surgery except they rebuilt my tongue on the left side. I hear you on the taste we've all been there.my chocolate didn't go away either.. I could taste strawberry a bit too. I lived on ensure for about 3-4 weeks near the end, (week 5/6 and two weeks after...) I would pop a pain pill then rinse with magic mouthwash then when both were working, I'd chug my ensure (I had it down to 13 gulps!) clean my mouth and pass out! this was only for the week following treatment up to that I didn't really need the pain meds (oxy didn't dull the pain just made me sleepy!). I downed about 4-5 ensure a day (extra calorie) and added a protein powder to one of my drinks daily. I got through it without using the peg I had one but wasnt able to keep peg feedings down, so it is doable, you just have to push through it. I lost 20 lbs total. I found a water pik to be great for keeping my mouth clean and getting rid of the ropey saliva. I used it on the lowest setting and mixed Luke warm water with a bit of organic, alcohol free mouthwash.it made me feel fresher. Welcome, and sorry you have to be here but glad you found us. Good luck!

Wow. Thank you all SO much for the advice and encouragement. I wish I had found this sooner. Life was pretty lonely after surgeries too. But better late than never:) My boyfriends mom was able order me some benecalorie so that should help with what I am am able to eat and I Switched to whole milk and bought some scandishake. I realize everyone is different but I was just wondering about how long it took for your taste to come back Cheryl? And just your overall experience with this? I am so, so scared it is going to take a long time and/or never come back:-/ Thanks again everyone<3

Marie

Hi Marie!

Welcome to OCF, glad you found us sorry you had to.

I think I had my taste back for all but peppery acidic foods back within a few months. Took me over a year to do pepper again...still not a big fan of it anymore where I loved spicy before.

glad to have you aboard!

Eric

My taste is still not the same as it used to be, but I can taste most things. Many things also don't taste as good as they used to. Coffee was one of the first things that came back, and I love coffee, so I was very glad of that. I don't do well with spicy foods, either. They sort of irritate my mouth. You have found one of the greatest groups of people in the world. We are all here for you! God bless.

Hi there I just hit the 10.5 month mark with rads my one year post rads will be may 4, about 2 mos after treatment I could eat comfortably. Up to that food was not terribly pleasant particularly with my throat being sore not agonizing - just uncomfortable. Taste has come back slowly. It's almost like rads dulled my taste. And every week or so I note improvement - strangely enough foods in their natural state taste best. Additives etc,, set me off - pop tasted like turpentine junk food just tastes wrong - still does somewhat since my sweet and salty are sporadic though getting better daily. Spicy not pleasant but I'm getting better with vinegars actually had a salad yesterday that was terrific. some people say they note improvement after 2 years. It's very dependent on your body. Tomatoes were unpleasant for a while. But have gotten much better! I do notice that I get the full taste of stuff for a bit then it might Peter out think at that point my buds are overwhelmed. But it's probably at about 75 % now. I do think that you have to keep trying, maybe just repetition helps as well. I am getting the nuances of food much clearer now. Hugs... Try not to Despair - be patient with it - it does come back for the most part. I don't do meat so I can't comment on ths part but I'm sure someone will. Take care. These last few weeks are hard but we're here.

One of the only times I've seen my husband shed a tear in all this was as he stared at a plate of food he would normally have LOVED. But he didn't want it. He wanted to want it so badly but he just couldn't. But he HAD to have something. It wasn't about the pain of swallowing, although there was some of that. It was about nausea or no taste or funny taste or just bad taste. It broke my heart.

We caregivers are at a loss for how to help. Most of us try various things along the way -- tough love, yelling, arguing, being nice even. Ultimately it all comes back to you though. Somehow, some way, you've got to do it.

Your guy is probably just doing the best he can. Is he young, like you? Hopefully he'll be there for you to keep butting heads with. Because if he isn't, then the only one left to argue with about this very important thing is, well, you.

All the best and I am so sorry you are having to go through this.

Marie, welcome and I'm glad you've found us. I really feel for you with what you're going through. Please listen to what all these veterans are telling you, especially the part about things getting better! They definitely will, even if right now you feel terrible and that the treatment is endless.

The thick saliva and mucous is normal... which doesn't make it any easier to deal with of course. You might ask your medical team about Caphosol mouth rinse, it may help in addition to the water and baking soda. If and when the mouth sores return, if it becomes especially difficult to swallow anything you might also ask for some viscous lidocaine to numb your mouth temporarily.

I found that the return of taste and the desire to eat came back gradually beginning maybe 3 months after the end of RT. Yours may return earlier of course. Sweet things always tasted ok to me and it was the Ensure clones that got me through it. It took a good year before I was ready for things like tomatoes or citrus and, like Eric, I can no longer tolerate the spicy stuff I used to love.

But all that is a small price to pay, and please let me reassure you again: It will get better!

Keep posting. Everybody here is on your side.

All I can really say right now is Thank you, Thank you, Thank you. Yes, my boyfriend is young like me and has seemed to come around as he has seen me trying to get my nutrition through the shakes and the benecalorie and at least eating the oatmeal. It's something. It's really encouraging to hear that it does get better because when you google crap all you get are horror stories because, of course, the only time anyone wants to bitch or speak up is when things aren't going their way. Tomorrow is only 2 more weeks of rads! But I will say I found another little bump on the underside of my tongue that looks a lot like the one that popped up that made me go in for my third surgery that also came back positive for cancer. Had a little meltdown last night and my boyfriend was really supportive and told me to see my radiation/oncology dr. tomorrow and to call my ENT who has done my surgeries and said we'll go see him. It's been a while since we've seen him since my last surgery anyway. Hoping it's just a radiation side effect.

Hi MB (I shortened your name ;): I didn't have your type cancer, but sure others will chime in soon as to your new "find" this soon, and while you're still in treatment. I just wanted you to know that I will be praying for the bump not to be cancer - it could be anything, but that's easy for someone to say if it's not happening to them. I go "ape" every time I find something new in my mouth area now, even though I had tonsil cancer 4 years ago. Also, I need to stop the google crap too because I agree with you on that one. Let us hear from you after your doctor visits tomorrow.
julieann

The spot may just be radiation issues. I had sore spots on my tongue since it was so swollen from rads it was being pushed up agains my teeth. Radiation makes your mouth super sensitive to many things trynto to worry but Bo show it to your RO. Hugs good luck tomoRrow.

Marie,

My wife made me a ice cream shake made of chocolate ice cream, a few spoonfuls of peanut butter, and scandishake during the tough times of chemo and radiation therapy. chocolate barely registered with me.

The other option - orange soda! go figure!

I lost 40 pounds in 7 weeks, but my taste buds did come back - ever so slowly - and I hope it does with you.

Best,

Sam

Just thinking about you and wondering how you are doing. Must be really close to finishing radiation. Drop a line if you have the energy.

My RO just gave me this last Wed-Fri off for a long weekend because I was in so much pain. It definitely helped and I finish this Friday. Absolutely cannot wait! I spent my long weekend with my boyfriends parents up in Northern AZ and was elated to eat some pancakes drenched in butter and maple syrup! lol Also - his mom found a weight gain powder, ya know the kind I assume bodybuilders would use. It says to put it in milk or water but I've been adding it to my oatmeal and pancakes. 2 scoops a day=1500 calories!

I did see my ENT and he said it would be unlikely that something else would pop up during radiation and that it was probably just a side effect. My neck did become really red and sore but peeled just like a sunburn and my skin looks great now that we're not radiating my neck anymore. All in all I'm feeling a little better and more optimistic about the future.

Though I can't always taste everything on my tongue I can make out a lot of things 'from the back of my throat.' Does that make sense to anyone else? Is that common? There are a few things that just don't completely register at all but for the most part I seem to be able to make some things out still.

Sorry I haven't been around to post much but I was having a pretty tough time up until my break. Feeling pretty ill and weak. But I can see the finish line and I just can't wait to start healing! I'll see my RO tomorrow and be weighed but last time I checked I had only lost 21 lbs. Doing my best not to lose any more. Thanks again for all the support and feedback. You all have been just awesome.

Marie<3

Oh yeah! My cousin found this book by Chef Grant Achatz that I started reading. I'm sure more people than I realize have heard of him. But he was diagnosed with cancer in his tongue as well. I can't imagine a CHEF of all people being stricken with this awful cancer. Anyway - I'm halfway through. Haven't gotten to his illness yet but I will probably finish it in another afternoon. Very engrossing so far. I encourage anyone to read it that hasn't.

Marie

I haven't been on here for a while been very busy but as everybody has told you it will get better Marie. Hang in there. Believe me I was the B from hell with trying to get Ron to eat, I didn't understand the pain he was going thru but after joining I learned how much pain he WAS in and to be patient I cried out for help and I got it from all these wonderful folks on this forum. Now Ron is eating again, not like he used to but he is really eating alot more different foods and it just tickles his mom like crazy I thought she was going to cry when I told her on the phone to guess what he just ate for dinner and it was a very thin ribeye steak and small lobster tail! And Yes salt bothered the heck out of him and I just didn't get it especially after that man put salt heavily on everything he ate BEFORE the cancer and pepper...eh he will put some on some things now as well as salting and he eats vinegar on his spinach and he so loved tomato soup that he just let the burn go and eat his tomato soup or stewed tomatoes. And taste is smell, you do have tastebuds and I don't know exactly where which ones are at but you can look that up online. Good Luck my young friend and hang in there!! I still have to get Ron to try darn pancakes or waffles I keep telling him...thanks for reminding me!

Glad to hear you are working hard at keeping up your calories. That will make a huge difference in how you feel. Right now your body is working so hard fighting this and trying to rebuild itself that you are burning up calories at an amazing pace. Push yourself to get a minimum of 2500 calories and 48 oz of water every single day. You probably have realized you cant skimp one day and make it up the next. If you can hit 3000 calories and 60 oz of water or more thats even better!

Hang in there and before you know it this will be over and you will be in recovery mode. Next month this time you will be feeling much better and it only gets better from there.