My tongue and cheeks are still covered with sores, mucositis, so it burns for me to even drink Boost or water. I had a g tube until Dec. 2014. Had a second surgical biopsy of cheek and tongue on Feb 2015, not cancer. Drs can only say "we don't know why it taking so long for you to heal". Any thoughts or suggestions please. I am very discouraged. [font:Comic Sans MS][/font]

Some people seem to sail through this and some people struggle for months. There's a reason Christine is constantly talking about intake, because from my experience and observations it makes a huge difference. When I was forced to drop my intake it took me weeks to stop losing weight, and then it took me many months to recover. Of the people I went through treatment with the people who did best were the ones able to continue to get calories in.

Maybe its time to put the tube back in? Why did they take it out?

Very good question Dave. Why would they take the tube out if you are unable to eat?
Pattie, I'm truly sorry that you are struggling with this. I'm presuming that oral thrush has been ruled out. Have you tried swallowing Manuka honey?
Hoping someone else can offer you more suggestions.
Tammy

Pattie, are you taking ibuprofen or any COX inhibitors like Feldene or Celebrex?

What did the pathology say from the recent biopsy about the sores? I see you had verrucous carcinoma, and wonder if verrucous leukoplakia, Verrucous hyperplasia or chronic candiasis, etc. are possibly associated, causative to the chronic issue.

Hope this resolves soon for you.

Tube came out Dec.2014. I had started drinking the Boost. I was thinking about having it put back in.

No I am not taking any of the drugs you memtioned only Hydrocodone.

I know it's painful but poor nutrition (or lack of nutrition) seriously affects overall healing.

SO... Buy a high protein powder. Add milk or almond milk and blend.

I know it's painful to drink

so ask for magic mouthwash, swish and (if you can - swallow - I say this because some of them are made to be spit out... some you can swallow) otherwise spit it out.

this will numb you. Then CHUG your smoothie.

do this 2-3 times a day. and supplement with the boost.

Also if you are cancer free. Take a good multivitamin daily, and maybe some vitamin d and c. (ask your dr if this is okay.)

after you down your smoothie/boost. brush your teeth, waterpik them with luke warm water (replaces floss - freshens and cleans) then take a spoonful of manuka honey and let it melt in your mouth. swish for about 1 minute. Swallow. this is antibacterial, anti inflammatory, and fights infection. It stings at first then numbs and soothes.

Keep your mouth as clean as possible.

If you don't have a waterpik i advise getting a deluxe one and use it on the lowest setting with the tongue cleaner (looks like a little spoon) it is terrific for cleaning and has different levels of force.

hugs and best of luck.

Thank you for your suggestions. I will get some protein powder and Manuka honey. The magic mouthwash puts me thru the roof as does toothpaste. Have been flossing but will have to buy a water pix. Will try anything at this point. My Dr. at Moffitt has not been much help. All she says is "we don't know why it's taking you so long to heal". I have an appointment with my dentist on Fri. Thanks again.

Sometimes it's trial and error. I know it totally sucks. I experimented a lot. Clearly my mouth isn't as sensitive as yours is. However I had this lovely hole/ulceration on my tongue for quite a bit. I stepped up the cleanings, and used cortaid to help it heal. I wouldn't advise long term use of it though as it's a steroid an can mask other issues. Maybe talk to the pharmacist. There are different types of magic mouthwash. It was actually invented by a dr here at my local hospital - but from what I've heard the formula varies. I was told I could swallow mine. I know it had nystatin and lidocaine. I am not sure what else. But I know others haven't been able to swallow it. So. Maybe they can mess with the formula to see what may work. Sadly (though I wouldn't wish this upon anyone) most drs who haven't been through this simply don't get it. They are mostly of the mind set - well you're alive and cancer free. They simply cannot understand the pain.

Anyway. manuka - does sting. but after it it feels great. Now if it is too painful Cut it down with warm water.

hugs.

There is toothpaste via Rx for sensitive mouths. One is called Prevident 5000; there are others. Your dentist can write one for you.

I used natural toothpastes tom's is one... there are a few others that are liquorish flavored etc... that don't burn as much. I also used the children's sensodine/pronamel. It doesn't burn as much because its less MINTY.

hugs.

Pattie,

I was one of those really slow healing patients and really baffled my doctors. I lived on smoothies for well over a year. I liked them cold and would also add protein powder and ice cream.

The suggestions given in this post are great. I tried a few magic mouthwash mixtures, one that did help sooth the ulcers included Maalox and I believe 2 other ingredients. I'll see if I can find out what they were - this was many years ago.

I never tried the Manuka honey, but heard good results with that.

Waterpik is great, also salt and/or baking soda water rinses.

My tongue was also swollen for a long time, and my doctor put me on prednisone. Eventually the swelling and ulcers went away, but still get an occasion ulcer.

As one point my doctor sent me to an infectious disease doctor to see if something else was causing the ulcers (nope). I was just one of those that radiation hit really hard.

It will get better! (((HUGS)))

Susan, Thank you for your reply. Sorry you had to go through it, but just hearing that someone else had the same issues I have makes be feel relieved to know that one day I will eat again. I did add protein powder to my Boost and milk. the Magic mouthwash I used was Maalox, Liquid Benadryl, and Nystatin, burned like hell.

Childrens Sensodyne sounds like a good idea. I was going to try Tom's but it has Peppermint oil. I'm sure that would burn.

Cheryl, thank you for your input. Not just Dr's but even friends who don't see the whole picture. You're alive and cancer free is definitely the mind set. Saw my Dr. on Friday and gave me some pain meds for nerve pain. I get the feeling of needles or hot strikes in my tongue. Hopefully this will help. She also had me talk to the nutritionist and wants be to consider counseling. I think she is starting to understand that this is not OK. Nobody wants to be in pain everyday.

the needles and such are a good sign can mean a little nerve regeneration although it's not fun. Do some tongue exercises to help it along. I'm glad they are acknowledging the pain.

Hugs... BTW... flavored tooth paste... liquorish orange doesn't burn as much. My tongue still hates mint but tolerates the children's.

Had too many side effects with the nerve medicine. Glad to hear it could mean nerve regeneration. Doing mouth stretches with tongue depressors. I take hydrocodone when i can't stand the pain, usually by evening.