Hi guys. I wanted to get some input on a couple things I've been experiencing. I'm about three and a half months post treatment now.

* Mouth pain. Specifically it feels like muscle pain in my tongue as well as that old ache on the back of my tongue that is similar to what it felt like just after diagnosis, but before treatment started. The pains come and go. There is nothing consistent about it. Also there inconsistent inflamation and muscle stiffness in the tissue in the front of my neck between my chin and adam's apple. I'm thinking this is all still the radiation doing it's number on me along with narcrotic tissue dying.

* Thrush. I keep reading about this on the forum, but don't really know much about it. Does it cause mouth dryness? I had amifostine injections and my mouth seems dryer now than in the first weeks just after treatment. The back of my throat is terribly dry as well. Is a yellow tint on the tongue a definate indication of thrush? What is the best and least obnoxious treatment for this?

* Is survival measured from the date of diagnosis or from the date treatment ended? I wanted to know when to schedule my first anniversary party!

I'm scheduled to see one of my docs next month and I will certainly bring all this up then, but there is nothing like in-your-face experience as well and I hoped to learn from the rich experience base here. Thanks in advance for your help.

-Brett

The fibrosis of soft tissue will continue. I am 18 months post radiation. I started to notice from last May that the tissue around my neck become harder and harder, the range of stiffness is bigger and bigger. I asked my doctor about it and I was told that it is the fibrosis of soft tissue. My left side of tongue is also painful, sometimes, it feels like pin and needle, sometimes it feels numb (I just realized that numb is defined as a type of pain too).

The survival is measured from the day of diagnosis.

Hi Brett,

Survival is measured from the moment you wake up in the morning, and starts again the next morning. :p

The doctors opinion of survival starts at the end of your treatments. That is a bit confusing though, because it is possible the surgeon got all of it during surgery. Therefore the survival starts as soon as he sews you up. On the other hand it may have been half way through your radiation when the last crummy cancer cell was fried. So your radiation Oncologist will take credit and the timing starts from the end of radiation. Of course nobody knows for sure.

The scar tissue and the radiated areas will have pain that comes and goes. My tongue has pain much like muscle stiffness (I found that stretching my tongue out helps but it looks pretty funny) neck pains come and go with the wind....and the snow....and sun....and stress....and well you get the idea. Sometimes I'll get a burning sensation in my neck muscles that I want to do stretching, but the stretching makes it worse. When that gets bad for more than a day I take Diazepam (prescription). It helps within the hour. Generally I do neck limbering excercises all the time. I now have most of my neck mobility back.

Thrush/yeast infections are common their symptoms vary and many doctors will claim you don't have it because it is not always visable like it would be in a person with normal salivia. A burning or itching sensation, worse with some foods and sometimes a coating or visable film on your tongue or other tissues. I knew when I was having an attack (literal since they are living creatures) when the burning started and I would loose some sense of taste (hard to describe but kind of a dulling of taste sensation). I used NYSTATIN in a mixture called a "swish". Make sure your prescription calls for non-sugar base. If you think you have thrush, get the swish. Nystatin is nearly harmless unless you are a yeast cell, and it worked quickly for me. I still keep a bottle just in case (although I have less problems as time goes on). The Diflucan is a powerful systemic drug and can cause nasty side effects. Reserve that for a really stubborn case. We have had many good discussions about thrush here which you can search out and read (use the "search" click word and type yeast or thrush)

As always, check with your doctor about anything that bothers you.

First anniversary party: I asked my oncologist and head & neck surgeon about the survival anniversary date and they couldn't give me an answer. So I chose the end of treatment for my date. In the scheme of things it's only 6 weeks difference anyway. So Friday is my one year anniversary (I'll start a new thread on this on Friday so don't hijack Brett's thread). It's your call Brett.

Mouth pain - yep - samo - getting a little better now. Still have some weird little pains when putting tongue in certain positions. Yawning pain still. Probably fried muscle tissue. I don't worry about it anymore - I just assume it's part of the "new normal".

Thrush: You got it backwards - it's caused by drymouth. And dramatically exacerbated by taking antibiotics. If you had IMRT and are a candidate for some salivary function return be aware it can take 18 months or more. I can't comment on amofostine. I also am not sure about the tongue tint. Mine is pretty much on the white side at this point and I am not having any problems. There is some very thorough information on thrush elsewhere on the site.

Like Gary I still have pain yawning, not as strong, but still there. Under my tongue is still very, very tender as are the sides of my tongue way in the back. My tongue is still sore is I move it back and forth. Much improved from a few months ago, but still has a long way to go to be healed.
I did have a yellowish tint to my tongue for awhile, and it was white for awhile also. I still have a white coating in my mouth when I wake up or if I don't drink something for a half hour or so. I still have lots of whitish lines in my mouth, on my cheeks, sides of tongue and on top of tongue. In fact, my mouth is a mess right now! I am eating lots of food and my teeth and the new food irritate that heck out of my mouth and tongue.
Gary and Mark are the experts on thrush, there is also some good stuff on this site about it.
Hang in there!

I am 14 months past treatment and still experianceproblems with my mouth. I had thrush so bad that I was treated by an infectious disease doctor. Even diflucan 8 pills a day did not work. Finally a medicine approved only this past year was used and cleared the thrush. The side effects were unreal and I do not know if I would take it again. However, I once again have bubbles in my clear saliva and no one is able to identify the cause.

Hello Kiba, Welcome.

I'd like to hear more about your experience with thrush. Did they culture it to identify the strain? and could you post the new drug that worked for you?

Take care

Hi Mark,
Thanks for the response. It was cultured, however, they could not identify the type. As for the medication, I finished the pills and discarded the bottle. I will contact the infectious disease physician and see if I can get the name of the medication.

I am thinking that my mom has thrush. She has a big white blotch on the front part of her tongue. She just finished radiation 2 weeks ago and her mouth is healing ok. She showed me her tongue and the blotch is probably 4 cm or so and oddly shaped and a looks kind of like a blister. She is seeing her oncologist on Friday so I'm sure she will let her know what it is. Also she really wants to drink or should I say swallow a big glass of water and she can only sip so its frustrating for her because she is so thirsty. How long before she will be able to drink and not sip?

Danielle

It very well could be a blister - I had lots of those too. The ones on the tongue took a long time to heal - but they will.

It was several months at least until I could chug anything again.

Gary,

That was the word I was looking for "chug". She is eagerly awaiting the point where she can chug again and wondered if she would ever be able to. By the way she feels really good today. She says she has more energy than shes had in weeks!

Danielle

Danielle,
Tell your mom that I still have sores on my tongue and I am 8 months out of radiation. It takes a long time to heal and some of the sores I have now came out months after radiation. I believe that once we start eating "real" food again that we damage the now very delicate inside of our mouth and our tongues, causing the sores/ulcers. At one time the one on the tip of my tongue was the size of a quarter, even a bit bigger.
Also, I didn't have any problems drinking water, etc. It was carbonated drinks that I craved and was very excited the day I could drink a Pepsi and it didn't burn my mouth!
I'm glad she's feeling better..........it will continue to improve now.
Take care,
Minnie

Danielle-- now that she's a few weeks out from radiation, she should start that slow but wonderful upward turn (sounds like she already has)... I know I did, though I took a nice dip at one point afterward before coming back up... Nuitrition is very important -- some of my big problems came from being dehydrated and not getting enough good calories in me...

I'm now two months out from IMRT and I feel tons better... I'm even working about 30-35 hours a week and eating a diet of "real" food most meals (even taco salad the other night, without many chips however)... Like Minnie, I crave my carbonated beverages, but they still burn too much... That's probably a blessing as I drank way too many of them before and wonder if all the sugar and poor nuitrition contributed to my condition in the first place -- that's for another thread, though...

Keep up the good work as her caregiver... You and others like you (my wonderful wife!!) are true gems for walking through this with us...