Hi, friends!

This may seem strange, because it does to me, but over the past several months I have been finding my tongue to be much more sensitive to spices. Also, I sometimes get an unbelievably sharp pain in my salivary glands when I eat and the saliva is trying to come out. These are the little things that worry me and I know that I'm not alone.

I used to love hot and spicy food before OC and after my first round, I could eventually return to them since my taste buds and salivary glands were spared since I did not need chemoradiation the first round.

The strange this is that I am 26 months post-treatment (thank goodness) and I can't handle a lot of foods. Some are obvious, but some are not. For example, I cannot tolerate the following foods: ketchup, tomato sauce, most salad dressings (even Blue Cheese/Ranch), plain Kosher hot dogs, citrus, too much cinnamon tastes like a "Fireball", etc. Regular toothpaste and mouthwash (without alcohol) KILLS me, so I have to use my kid's toothpaste and/or my prescription high-fluoride toothpaste, as well as kids' mouthwash (which is also tough to take).

Also, I've been eating a lot of salads (with tender lettuce, cucumber, baby carrots, and grape tomatoes, sometimes beets) and I find that eating food that requires a lot of chewing not only makes my tongue sore (at the surgical site, but it seems to irritate the entire surface of my tongue. I feel badly complaining about this on the forum because there are lots of people here who are NPO or cannot eat but a small selection of foods. It's just that even though I have had tongue cancer and tonsillar cancer, I have been a compulsive overeater/food addict my entire life. I have been up and down the scale 80-100 pounds more times than I wish to count. I have been in and out of Overeaters Anonymous and have had periods of success and then I would leave and gain all the weight back, with interest.

Despite having these cancers, I have approached my top weight. I mean, who gains 50 pounds after recovering from surgery and chemoradiation? A food addict/compulsive overeater does! I know that this weight gain increases my risk for cancer among a plethora of other diseases/conditions and I am grateful to say that I am working with a sponsor and going to meetings 3 times a week.

My food plan does not include flour or sugar, so a lot of the "easy to eat foods" are not on my plan of eating. My sponsor knows that I have to work within my own limitations and there are plenty of ways to prepare the food so that it will be more gentle on my tongue/throat. I was just trying to do it the way I used to (it's only been nearly a month) and this is likely the source of my surgical site pain, but the spicy intolerance is another thing altogether.

I just wanted to give a little bit of background about me and my food problem, let alone having had oral cancer twice.

Since my doctor visits have been getting spread farther apart, I often forget to bring up the sensitivity issue up. I ALWAYS took a 5-subject notebook to ALL of my appointments...for every type of medical professional. I would write notes/questions down ahead of time and make sure that they were answered before I left the office, but I admit to getting lax on that over the past 6 months. I will start doing it again.

I apologize for the rambling nature of this post, but I guess I'm wondering why this is happening NOW (the sensitivity) and if anyone else has experienced something similar.

Thanks for listening.

Love in OCF,
Kerri

Last edited by Kerri; 12-13-2014 09:20 PM.

37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!