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Joined: Nov 2007
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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?

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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


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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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 smile )


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Ooo... fizzy sodas! I recently discovered sparkling water again, so very enjoyable. And I drank an old root beer, which was delicious.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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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




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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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.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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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


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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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.

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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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