So I had a hemiglossectomy in april 2010 and then had 30 rounds of radiation that ended july 15th.

I am wondering how long it will be before some side effects from all of that treatment go away.

Right now my sores from radiation are "gone" but they still hurt in the spots that they were.

Every morning that I wake up, my whole mouth hurts. I think partially due to dryness but other then that i am not sure.

Also whenever I eat anything that has tomato in it, like spaghetti, pizza, chili, it tastes spicy!

Any help that people can give me would be great, and I hope the spicy goes away, makes it hard to eat any of that stuff, and I can't tolerate anything spicy anymore, when I used to love to eat spicy things before treatment.

Thanks in advance!

Hi Bethers,

I'm a few weeks behind you - i finished radiaton and chemo on 6th August. I can say that i still one or two sores. Still eating very soft food - eg porridge, noodles in broth, smoothies, and purreed soups etc. So i think what you are going through is normal for the recovery stage you are at. From what i gather, some people can never tolerate spicy food ever again - i know i used to love it too!! How i miss those days!! I was the worlds biggest foodie!! I have not even been game enough to try any of the food you mentioned. I guess we should be happy that we can eat at all because there are lots of oral cancer sufferers who cant.

Yep, i wake up and my mouth is so dry, although its prob more uncomfortable rather than sore. I wake up several times a night - every night, to sip water to relieve it.

Guess i'm not much help. Maybe other members who have finished tx before can shed some light on the topic.

Minh

I finished tx Aug 24th. I still can't eat onions, garlic, pepper... i can however eat low acid tomato sauces. and fresh tomatoes. Just think of the acid levels in things. Also drying things like avacadoes, grapes, some fruits juices. Your saliva glands are not working all that well right now but they will come back. eventually. There is mouth gel that you can use before bed. It's called Bioten here or Xylomelts that help stimulate the glands. Sugarless candies can help although with the free flap surg, and having my teeth pulled I can't manage the candies. But the Xylomelts are tiny and they stick to he inside of your cheek. Everyday just keep trying different foods your mouth will continue to heal and things with change.

And just to prove that our reaction to treatment is completely unpredictable and very individual... Alex is adding chilli to everything so he can taste something. He loves tomato soup but can't handle chicken soup. Hates the taste of avocado and mashed potato gets stuck. Vegemite makes him retch at the thought (very unAustralian but entirely understandable to the rest of the world). By next week the reverse will be true I am sure.

But seriously, Alex's taste disturbances started back in March with chemotherapy. The first thing that came back was Alex's sense of sweet which lines up with how children develop. So if we use this as a guide the last thing to come back should be spicy (although Alex is the exception). Sorry, can't remember the order of the other tastes but maybe someone will be less lazy and Google for me.

Alex's taste and craving for one thing or another changes from week to week. Since we were warned that taste may take years to recover, he was over the moon the day he discovered that beer is palatable again after 5-6 months of sitting one in front of him for appearances sake only.

I never lost my sweet taste so I guess I never lost my childhood during Tx. My ability to accept citrus, carbonation and spicy foods were the last things to come back for me. Never heard about that ordering thing. That's interesting.

Ron also has the same issue with Tomatoe foods being spicey. He did eat the chili my son made and yes it had it's own spicey going on but he did eat it, i put some shredded cheese in to melt it and cut down on the spiceness. He can drink soda, coffee took a bit to get back into, as well as his "beer" darn it that could have never came back for all i cared. He does mashed potatoes and gravy, tuna and miracle whip didn't fare too well, another good thing is egg salad, put that in a processer and it makes such a creamy dish as long as no onions or celery is put in. and ron is pretty much on the same schedule as you all are on(i did try and put that in my signature but it won't work!) his operation was on May 13th, radiation ended Aug 16th. He is getting better day by day as i am finding out in reading how everybody else is eating that are able to eat, which is something I tell him everyday, how lucky he is to be able to eat food where some people can't.

very true to all and thank you. The spicey is starting to tame a bit, but i still can't get through half of a small wendy's chili without it getting to be too spicy, and it never used to taste spicy at all.
Also starting to tolerate carbonation in pop and beers a little better, but still hurts. At 26 that is sad, but it's better that i am alive versus being able to tolerate certain foods.

Had positive results on my first post treatment scan. I am hoping biopsy tues Nov 9th 2010 will prove to not be cancer, otherwise i will possibly be a part of the "lucky" ones that can't eat. But thinking happy thoughts for now, or at least trying to.

was so proud of myself, i went into the appointment to get results for my scan telling myself and thinking i would get all clear, but i was wrong.

I have decided oral cancer is kind of like the military in that it's kind of a game of hurry up and wait.
Hurry up part is surgery and treatment, as they rush you through those as quickly as possible, while waiting for scans, biopsy and diagnosis is the wait.
I didn't like the hurry up and wait game when i tried to enlist in the military and i sure don't like it now for OC.

Hoping for NEGATIVE results from biopsy at least by tuesday nov 16th 2010.
Positive areas are jaw, soft pallet and tongue. They also found a 1 mm nodule in right lung.

Any positive thoughts, well wishes are greatly appreciated!! The more positive thoughts and wishes for negative results, the more likely it is to happen right??

Here is a list of easy to eat foods. This should help you in relearning to eat again. A few very easy ones are canned peaches, chicken and stars soup, baked sweet potatoes with butter and brown sugar, and yogurt.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

I have found for dry mouth I use Biotene. However, at night just before I go to bed I have some soft bread soaked in a really good quality olive oil. It coats your mouth and especially the tongue, therefore your get a good nights sleep with no discomfort.
Hacklene

I'm 3 years out from radiation and chemo. Olive oil burns my mouth because I don't have any functional saliva producing glands.
I can't eat solid foods either because there is no saliva to create the bolus to take the solids to the back of my mouth and down the throat. I use the XEROS Dry Mouth Pump all night to wet my mouth. But my dry mouth is permanent and chronic so the dry mouth pump works extremely well for me.