I am 11 months out of chemo-radiation for base of tongue cancer. I have had the usual dry mouth, swallowing and trismus problems. I am finally resigned to the fact that in order to eat anything healthier than smoothies, ice cream, pudding, mac and cheese, Stouffer's tuna noodle casseroles and other soft foods, I am going to have to blend it. Even after having the esophogas dilation surgeries and doing the swallowing exercises, things are not improving all that much. But for social reasons, I eat out at restaurants a lot and usuallyam limited to ordering the soup. But I find if it has any black pepper sprinkled in it, it burns my tongue. I don't know why after 11 months, my tongue has not healed any. Does anyone have any comments or advice on this?

I still can't eat black pepper or spicy food. And I'm 5 years since my first surgery. I don't know why - seeing as my flap and subsequent graft are both from my legs - why would my mouth be that sensitive? I will however encourage you to expand your horizons re food choices. Yogurt with fruit is great, eggs, anything with gravy on it and, depending on the restauraunt - getting a "word in" with the server will usually find them bending over backward to accommodate your needs. All you have to do is ask. Remember - that restaurants are one place where you ARE paying for preparation so you should be getting what you like and need. Be assertive. At Mac's I'm limited to the chicken nuggets so I try to avoid it. Sit down restauraunts I can usually find something. If we are going out to dinner I usually make sure I eat something at home so that should I be disappointed with how things turned out, I can just pick at it and enjoy the company instead of sitting there ravenous and bitchy!

We adapt - we have to, but its all good.

Donna

Donna

Only 11 months? That's hardly any time at all! My treatment ended in Aug. of last year, and I still can't tolerate spicy foods, nor do I have my taste buds back. Radiation fries your little taste buds and from what I've heard on these forums, it can take up to two years for them to be fully recovered. Be patient! (As frustrating as that is )

I was well into my 2nd year post Tx before I could drink even a fizzy soda and pepper and hot stuff came last but now there isn't anything, including the hottest hot sauce that I can't eat.

As we all know, each of us can come out vastly different undergoing the same Tx but 11 months is way too soon to determine where your recovery will leave you.

Come back this time next year and I bet you will be singing a different tune.

Ooo... fizzy sodas! I recently discovered sparkling water again, so very enjoyable. And I drank an old root beer, which was delicious.

I agree, 11 months is just like yesterday.
Recovery is individual, still even after more than 2 years things improve.
More taste, better tolerance of spicy foods etc. I still have some issues with fizzy sodas, but it is way better than it used to be.
I used to get pasta in restaurants (with gravy), but you can always request food that is not spicy, just ask. People are generally very helpful.

M

Margaret, I find Root Beer as well as Cream Soda refreshing like I did the 1st time I tried them. That was a surprise, The best I have found so far is Hank's out of Trevose ,Pa. They also bottle an Orange Cream Soda that is very good. It is hard to find but I found them at a place called Ollies. A 4 bottle pack of 12 OZ costs $1.99 and is well worth it. My one grand daughter tried them and took what I had home, LOL But I hope to find more of it.

Here I am again - bitching about this constant sweet-putrid taste in my mouth, with constant mucus. Am I the only one that has this? It's not just when I first get up in the a.m., it's constantly there; I spit (yuk) all day long to get it out. It'll be 2 years next week since my tratments (chemo and radiaiton for tonsil cancer), and it's worse now than during and right after treatments. I keep mentioning my complaint in hopes that someone else has the sweet, after-effect and it can be related to the treatments. I'm in the process of having other things checked out (e.g., gall bladder, hietal hernea, other gastro problems), but if I find others have had such a problem and associate it with treatment after effects, maybe I could accept that is what it is - after effects. My chemo and radiation doctors say it could or could not be associated??? Has anyone out there had such. Thanks for any replies.
julieann

Thanks for all your replies. I guess it's lucky I don't like anything sparkling, including champagne. By the way, when can I drink wine again? One guy with the same treatment told me it took him three years. I can drink alcoholic drinks as long as they are extremely diluted. I have learned to adapt at restaurants. The worst part is that I am dating again and dining out can be kind of embarrassing what with all the coughing. I think I am having more problems with aspiration from plain liquids than food. And also having to turn my head to the left and tilt it down before swallowing so the food will not get stuck in the throat. Sexy, huh?

Lauren

I guess I should have said that I was DX 10/07 at Stage 3, one node under three centimeters, unknown primary. ND and tonsillectomy 11/07. No cancer found in tonsils. No more affected neck nodes. Did watchful waiting until 7/08 when biopsy found 4 mm SCC in tongue base. IMRT 37 sessions with weekly chemo began 9/09. Clean PET/CTs since.

At first anything alcohol not only tasted like crap but it also was not pleasant to have in my mouth or to swallow.

Like most of our post Tx non surgical side effects, they will pretty much resolve themselves within 2 years, give or take depending upon the individual and their specific Tx and their specific biological and genetic makeup, etc, etc.

Also, please be sure to drink lots and lots of water. I found over time that I was less tolerant to spicy foods if I had not been drinking a lot of water.

I too have more problems with aspirating liquid than with solid food. Doesn't happen too often, but when it does, YOW!

This all takes longer than we want or think.

Hi Lauren from LA, this is Dianne from NY. I also have begun dating again! I am able to eat soup, salads & pasta's dinning home or out. I had 6 esophogus dilation surgeries, I hope the rough salad keeps it open. At the last dilation (open to 17) the Dr. said I would probably need to be "stretched" every 3 months for life! Well, that was last Nov.!!! I'm eating OK! My ? to you is in re: to dating...How is kissing(I mean really kissing) w/dry mouth? Also, when is a good time to tell someone about the cancer? I joined match.com and have had a few good dates. But some I told via email, before we met...I never heard from again. I have turkey neck, & permanent discoloring in the front of my neck (that was not rad.) so I look like I have health issues.(eventhough I'm FINE) I'll take any & all advice!!! Thanks, Dianne

Hey Lauren, Dianne again! About the spicy food..I know-eveything tastes hot to me. All I ever seem to ask is "does this taste hot to you?" At home I cook sooo bland @ restaurants I get the salad dressing on the side, so it's up to me how much to add. When ordered food is to spicy, I drink tons of water (w/no ice) so I could gulp it fast!!! Even toothpaste is hot! I am using Crest toothpaste "Cavity Protection" LOVE it, it's like a toothpaste "mousse" Also buy a INTERPLAK- I love that too. Even after I have brushed & rinsed my teeth, I can't believe how much debris still comes out! (gross right?) During Tx I could hardly stand the setting at 1, now I have it set all the way to 10. I'm in the same boat girlfriend! So many of us are. What a help to have people a "click" away that understand! This site is the best! Dianne

Hi Dianne,
I was in a relationship during my treatment. Obviously we stopped all sexual relations during treatment and the first few months after. It's funny, because when we resumed relations, we did not do a lot of kissing. And it was mostly because of the dry mouth. It didn't feel great to me. There were a couple of times when we did a few seconds of open mouth kissing, and that worked fine for the few seconds. I, too, am worried about how it is going to work with a new guy. I know for sure that my days of giving BJs are over. Ironic, since that's what caused the cancer in the first place. I do tell all the men about being a cancer survivor right away. In fact it is in my on line profile. So far it has not scared away anyone. I have been communicating with an oral cancer research scientist at U of Michigan who has assured me that I can not pass on HPV anymore. I can send you his email if you ever need to prove this to someone. As for salads, I am impressed that you can eat them. They really stick in my throat. But what do you mean about them keeping your throat open? I had two dilations this past May. I think I was at 12 or 15, I can't remember. He did not encourage me to eat salads. But I am doing various swallowing exercises every day. Do you do them? Is there a way to post a private reply? If so, I'd like to give you my number. It may be easier to talk on the phone. How old are you, by the way? I'm going to be 52 in two weeks.

Also, Dianne, if you can eat so well, why did you decide to keep the port?

Lauren,

I would be interested in seeing such an e mail.

[email protected]

Thanks

Hi Diane:
I was just catching up on some of the postings and while reading yours I was like WOW! So much sounds so familiar. I have been able the past few months handle a few more "Not so bland" items. And yes, Lauren, I have finally been able to eat a little bit of pepper on cottage cheese! I look at this as a real positive step in that direction.
Best wishes to all.
Steve

On a happy note, I have managed to work up to a little hot sauce on my eggs. Just a little, or it still burns like crazy. But I will get there.

I had some Thai curry the other day.... I won't again for a while.

I am running into the same, 1 month out of treatments and every thing is hot.

I was taking zinc to get tastebuds back and suddenly I am able to taste Stevia natural sweetner. Up until last week I knew when things were sweet but I could not really taste honey or sugar or artificial sweetners. I got just the essence. So glad for Stevia.

I pass a Thai restaurant almost every day. I just haven't worked up the courage yet. SOON. Indian too.