Hi, I'm Donna, an eleven year tongue cancer survivor. I was Dx'ed in 1997. Stage IV with mets to my lymph nodes. In April of 1997 free flap surgery and radical neck dissection. I lost over two thirds of my tongue. I recovered for six weeks and then the real hell began. Treatment. Somehow I managed to survive 6 rounds of a seven day/twenty four hour drip of 5FU and cisplatin for which I was hospitalized. After my first round of chemo they added the radiation. By week three of radiation I was sick as a dog and left wondering if I would be able to survive the treatment my doctors so lovely planned out for me. I did survive but not before I lost 75lbs, had a feeding tube put in, recovered from 3rd degree burns on my neck and chest and lost my hair -- most of my hair, anyway. It was a living nightmare! It took almost a year but I slowly recovered. I worked with a speech therapist, leaned how to swallow, got my taste buds back and felt pretty darn good. I found a part time job and things have gone somewhat well since my recovery. I still suffer the side affects of radiation -- I have little saliva and that is what causes me most problems today. My oral cavity continues to burn from lack of saliva and my teeth are finally beginning to give out. I'm pretty sure I'll be wearing dentures before my 55th birthday. Still, a small price to pay for life.

Then in September of this year I got a Thrush and I could not get rid of it. It took me four rounds of antibiotics before I was able to rid myself of that awful stuff. But then something strange began to happen in my oral cavity. I developed a very bad burning sensation that went from the back of my throat to my lips, the bottom lip inparticular. BAD burning sensation. I've seen my ENT, my internist, and also a pain clinic and nobody can figure out why this is happening to me. Along with the burning sensation I lost what little saliva I had -- now it seems I have no saliva at all. My mouth and lips are continously dry. I have to keep my lips covered in Blistex to keep them moist but they still burn. BURN BURN BURN. This is almost as uncomfortable as the radiation I had eleven years ago. I had to quit my job, I can barely eat, and swallowing has become more than difficult. Eating now is just to survive and in fact, a feeding tube just might be easier. I can taste very little.

Has anybody else had this happen to them? My ENT seems to think this is all caused by the radiation I had so many years ago and he doesn't think my situation will improve and in fact, thinks it will continue to decline. I run a humidifer and drink liquids all day long but nothing seems to help. The doctors put me Euvoxx(sp?)to help get some saliva into my oral cavity but that doesn't help -- my saliva just comes in thick and ropey, just like when I was going through Radiation and that is the most uncomfortable feeling ever. I feel like I'm choking to death half the time. They put me on lyrica to see if that would help with the burning sensation in my oral cavity -- so far no relief. Has this happened to anybody else out there? What did you do for relief? Dry mouth is about the most uncomfortable thing in the world -- it makes everything from talking to eating difficult especially when you have less than half a tongue to work with in the first place. I'll welcome any suggestons. My Doctors just can't seem to help and seem as puzzled as I am as to why this is happening NOW. Thanks for listening.....hopefully someone out there will be able to help!!

DonnaMarie

Hi Donna
I have just noticed your post and see that it has been there for a couple of days now. Things can be pretty quiet on the board over the weekends and maybe someone will pick up on it tomorrow. I hope you aren't in the wrong section. Perhaps getting you into questions and answers might be the better place.
It might be worth your while to put a query through tomorrow. Sounds like you're going through hell, you poor thing.
I can't help you at all, I'm sorry but I'm sure you'll get some feedback soon.
Hang in there, you've found a great space for support and assistance.
Cheers from Down Under
Deborah

Hi Donna,

I read your post yesterday and when doing some other research earlier today, stumbled on a discussion about women around menopausal age suffering burning mouths. Sadly I didn't save the link at the time but have just done a quick google and found this:

http://www.dentalgentlecare.com/burning_mouth_syndrome.htm

It sounds as if you are suffering from a horrible problem, but this suggests that you are certainly not alone.

Best
Cathy

I wish I could be more help. I had radiation and chemo like you, but it sounds like your symptoms were worse than mine. The burning pain in my mouth has never completely gone away and my doctors at our pain clinic said they thought I had nerve damage. The doctor said it may last 3 years or may not ever go away. My last treatment was Febuary 07. I know how bad dry mouth feels. It's just terrible. My taste and saliva seems to be recovering slowly but surely but very slowly. The biotene products have helped but also acupuncture helped a lot. Other than this, I can't offer you anything but my deepest sympathy.