Just wondering if others out there still had or have mouth issues at 8 months post Rad and Chemo? I feel a little outside of normal because my mouth still hurts like hell and my tongue still burns when I try to eat. Still using PEG and would love to ditch it.


Stage III. base of tongue, no surgery

Len, two years post I have just been able to handle carbonation, and I think hot/spicy things will burn my tongue for ever after amen. Doc said occasional glass of wine would do no harm, but that burns my tongue so badly that I have sworn off. My mouth did not hurt, however, after the rad/chemo sores healed. Have you asked your doc about this? I, too, was in a heck of a hurry to ditch the PEG, so can understand that.

IEN, I am 6 months out of rad/chemo and my mouth still burns. My throat still burns, though not as bad, as well. Got rid of my peg at about 5 months out. Know how much you want to get rid of it, but keep it until you can eat enough to at least maintain your weight.

Ien:
I am only 3 months out of treatment and have expected to be able to swallow just anytime now. But, after reading your post I am depresed. I am in no hurry to ditch my Peg, it is like an old friend but I would sure like a steak. I loved eating prior to being strickened with this dreadful disease.
Darrell

You are all more junior compared to me. Now that I am almost 3 years post treatment, there are still minor ulcers along both sides of my tongue,which I think will never go away. When I am occupied, I don't feel their existence but when I eat or use mouthwash, I know they are there.I can't tolerate anything spicy, not even slight pepper. I don't miss such food since I still have a lot of choices. Steak is fine but make sure it goes with the right sauce. I can swallow almost anything around 4 or 5 months post treatment and I have never had a feeding tube. Be patient, we have a different schedule for recovery, some take a longer route and some shorter.

Karen.

Len,

I know it's frustrating, but I don't think your experience is abnormal. After 15 years, I've concluded that "mouth issues" may gradually decrease, but I don't think they really go away. When we go for Mexican food, I never can venture beyond the mildest salsa. When we go for Thai food, I have to stop at the mildest curry -- and even then I have to drown it with liquid. There are many cuts of meat that I still find too chewy, so I always avoid them (my diet is more heavily skewed toward seafood and pasta, which is OK with me).

I never had a PEG tube, so I can't comment on that aspect of it. If I were devising a rating system for the eating experience from then to now it would be:

During radiation (and for 4-6 weeks after) - excruciating; didn't want to face food

6-8 months after - painful

2-3 years after - clumsy and sometimes painful

Now - sometimes clumsy and infrequently painful

However, I've found a wide assortment of foods I can enjoy - so no complaining here.

Cathy

len,
I'm sure glad I read this string.
I'm 5 months out from my last Rads, and I'm beginning to feel like I'll never eat anything spicey again. It certainly is good to realize I'm not alone in the mouth sensitivity issue.
There are many things I CAN eat, and I've managed to stop the weight loss, so I guess I should't complain...but I sure would like a bowl of 3 alarm chili

Hang in there. As my doctors have said WAY too many times "That's normal, be patient, It'll clear up soon"

Chuck

I must be more onery than most 'cause I had that peg out probably sooner than I should have at about 3 weeks after last radiation treatment! I wanted to go swimming! I was also eating only orally anyway & always hated & resented the peg tube! Black pepper is very irritating, but I can eat most other spicy foods. Maybe not as spicy as I used to. I had a soft beef taco tonight drowned in salsa. I had to scrape some of it off though. Last night had sushi; spicy tuna, wasabe in the soy sauce for dipping & spicy chicken teriyaki! Delicious!!! It was a bit intense on the tip of my tongue. That's what seems to be most sensitive is the tip. I'm about 2 1/2 months out. With food I've just pushed & pushed the limit all through treatment. My mouth is most uncomfortable in the moring after breathing through my mouth in my sleep. A little water & a little time & it rehydrates once the spit starts flowing a bit. That's what bothers me the most is waking up with my lips glued to my gums & my tongue feels like beef jerky!

Len,
Hang in there. My hubby had and used only his PEG for nutrition for 5 months. I feel like he got it out too early because he lost more weight with the problems with eating and no taste. He is doing better now 5 1/2 months post treatment, but still mostly eats soups, no bread, some other things but besides choking on almost everything, he still has little-to-no taste in any food that he eats. It's pretty discouraging sometimes because it's hard to eat just to eat and not be able to taste. He is trying to maintain the weight, but believe me without the PEG it's very hard. He had tongue surgery and the max radiation (not IMRT), so that might be way he has still not taste.
Take care and God bless,
Debbie

Len,
I had to chime in here because we all have different experiences and recovery times. My mouth sores, like in the back of my mouth (with were actually ulcerations caused by radiation damage) took a long time to heal completely. I also had thrush which dramatically impacted the radiation damage healing process. Have they checked for that? Carbonation, spicey or acidic foods will burn like hell with thrush.

I also had blisters along the sides of my tongue but they were pretty much healed up completely by about 3-4 mouths. I can eat anything now, salsa, schezuan, hot chile, anything carbonated, etc. Not all of us suffer from a "restricted diet". At 3 months I was eating solid food.

I did choke a lot in the beginning but things have steadily improved (along with my salivary function). And also adjustments in my eating process.

I attribute this to 3 reasons:
1. IMRT
2. No surgery
3. No PEG