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#187169 12-13-2014 09:02 PM
Joined: Aug 2011
Posts: 596
Kerri Offline OP
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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!
Joined: Oct 2013
Posts: 559
"Above & Beyond" Member (500+ posts)
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Posts: 559
Hi Kerri -
I can't give you any answers for your questions, but do share the sensitivity for certain spices, particularly any of the hot spices like red pepper or anything that has jalapeno.

You didn't mention it above, but I also have a fairly long list of foods that don't taste good now (1 year post treatment, radiation only) that did taste better some months ago (post treatment).

Milk is one, most sweets (especially chocolate), some meats (beef). It's disappointing that return of taste for food has been so non-linear after treatment. I always expected/hoped that the list of bad tasting foods would just slowly decrease over time until everything pretty much tasted as good as it did before cancer. That just hasn't been the case. Maybe the one benefit of bad food taste is you don't gain much weight.

By comparison, your problems seem much worse; at least nothing I eat causes pain.

good luck
Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Dec 2003
Posts: 2,606
Likes: 1
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Kerri, I'm not sure any of the "whys" of cancer will ever be known. Each of us is different. I can tell you, though, rapid weight gains or losses can impinge nerves as can scar tissue/fibrosis. In addition, the part of our brain that processes taste gets affected by chemo and radiation. Some people never regain taste at all.

I'm probably not the comfortable solution but my approach is to increase the problem taste until the body adapts. Our mind will allow us to completely transform our tastes, if we are accepting.

The common ingredient in everything you listed is acid or vinegar. Ketchup was the worst and longest for me, next to Ranch dressing. Dark chocolate is the only chocolate I now enjoy but it hasn't been the same for 11 years now. To "reprogram" my tastes, I use visualization and remember what it used to taste like.

I have had the same sensitivit, as you describe on your tongue, only it is the back of the throat that got the most radiation. It just starts randomly stinging at times.

I tread softly on this, but you need to address the things bothering you with a professional. There are signs some of this came with you on this cancer journey. The worrying and constantly taking notice of the differences needs to go away. It can't do anything but stall your recovery. Just my opinion.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
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Joined: Aug 2011
Posts: 596
Thanks, Tony. At least I know that there were foods that used to be tolerable closer to the end of treatment and now, somehow, they are not longer tolerable. I think that's what you're saying and that's my concern. It's not so much as a mourning or grieving for not being able to eat certain foods. I was just concerned about the increased sensitivity.

The mechanics of chewing and tolerating certain food textures is something that is easily fixed and acceptable to me. I am now weighing and measuring my food on a digital scale, as I did years past, which brought me to a healthy body and mind. I have no doubt it will happen again, as long as I continue to do it one day at a time.

Uptown, thank you for your input, too. Your are right that the common ingredient seems to be vinegar or foods that are too acidic (tomatoes, citrus). I just happened to mention the plain Kosher hot dogs because it surprised me, of all things.

Thanks for the input. I really appreciate it. I will surely mention this at my next appointment. I understand that even my docs may not have an explanation, just as long as it's not a sign of something more serious going on. Our bodies are amazing and puzzling.

Take care.

Love in OCF,
Kerri


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!
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
If you study the olfactory sensory system, it's no wonder we have issues with taste and smell, in some cases, after radiation, as most of the parts necessary for taste and smell are in or close to the field of treatment.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Nov 2009
Posts: 644
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Just wanted to add my ten cents worth because this is a topic close to my heart:)

I heard a talk given by an RO some months ago where he said that a sensitive stinging tongue can be a problem after RT and can last a year or so. Unrelated to that I get sensitivity where the native tongue joins my flap. Not always but often.

Toothpaste can be diabolical. I have found that Colgates Milk Teeth paste is gentle on the mouth but alas have been forced to use NeutraFluor since radiation. This does sting but not as much as regular toothpastes.

Milky products are very soothing. If I get too adventurous and get "stung" I reach for the ice cream, a habit that has made me put back on some of the weight I lost during surgery and RT. In my case that is not a good thing because I am fairly heavy.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Apr 2006
Posts: 583
"Above & Beyond" Member (500+ posts)
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Joined: Apr 2006
Posts: 583
This is my First Aid Kit for spicy foods.... Sour Cream, This is # 1, then plain Yogurt to help fight thrush and soothing to the mouth.

I can not have any pepper and if it is in there then I Run for the Sour Cream!! I always have these on hand!! Also You can add sour cream to some soups to help them tame down some. smile

Hope this will help you too. I found that children Act mouth wash works good too. Bubble Gum!! Baking soda for tooth paste.


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015

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