Mommapez, I had a very large tumor in my mouth, nodal involvement, and 5 years ago finished surgery, rad, and chemo. I feel terrific. Wayne, above, makes a very important point in that you have to be ready to BELIEVE you can fight this monster. I seriously never had any doubt that I would get through the horrible treatment and come out the other side. In fact, I psyched myself out to handle things much worse than the actuality. I really do think this makes a difference. For every person like me who has been there and moved on, there must be legions of others, so do NOT get hung up on statistics. You are your own statitistic, and that is all there is to it. So fight the good fight! And know that we have your back.

Mommopez,
like Joanna I had a big honking tumor as well (see my signature below - and given even worse odds), well, by one doctor anyway. Like Joanna, it's been 4+ years now and I'm doing great. Forget the odds, they'll just drive you crazy and like others have said they don't take a lot of things into consideration.

Maybe there is no "cure" but you can certainly have a "complete response" (CR) to treatment.

Gary, there is not a day that goes by I do not think of the 50/50 thing...and the fact I may be alone without him. BP is running lower than usual. Temperture fluctuates. He looks pale or yellow at times, just not healthy. Sleeps while talking at times, then he tries to keep mobile. So sad. Will not allow family to see him. I am getting so drained by this. Today maybe a good day because he is going to a lodge with other cancer patients. He will be coming home on weekends. His diagnosis is T4AN2B. What do you make of that?

mommapez, maybe my presence here will give you more hope as you can see from my signature below that my tonsil cancer was a pretty advanced one and if my doctor had given me a 50/50 chance of survival when I was diagnosed, I would have been more relieved at that time. No, I was told that my chance of survival was far less than 50%. But here I am, 5+years in remission, doing great, travelling here and there and Joanna can tell you that I am not lying, right? Forget the threatening statistics and just do the best to fight the battle.

Karen

You leave me speechless....thank you...

I agree wholeheartedly with Gary's "Forget the Odds!" and Brian's link is great and it sure helped me to think more realistically and positively about this whole cancer "statistics". Doctors will have varying and different opinions. No matter what you are researching, I learned that statistics can be skewed and yield varying results depending on who or what is involved. And Riley, I really like what you said about "There is no cure for life" and I agree that one should get other opinions for treatment recommendations. Since my son and I experienced his cancer treatment, I think we've both realized a much deeper appreciation for life and all it has to offer and to appreciate every moment. It is too short to waste even a moment stressing over what "might be". (Besides stress alone can make you sick) I made up my mind a long time ago, that I was NOT going to let this DAMN cancer beat us! I was just NOT going to accept that alternative! (I don't use naughty words very often or shout, but I really have strong feelings about this so please forgive.) Besides, we could all get hit by a bus, tomorrow. Now, I truly hope that no one gets hit by a bus, 'cause I'll feel really bad if they do- so everybody - watch out, ok? And keep up the cancer fight!

Update...doctor says husband is responding extremely well to radiation treatments. His attitude is not great..but he received some pain medication for his mouth today and hopefully that will help him. The doctor told him to drink lots of water that he maybe slightly dehydrated and to put it in his feed tube. He seems to dislike almost everything he tries to eat...Any suggestions...I would like to see his attitude change..it is usually positive..again he refuses to have family members see him....

Mommapez,

When I was undergoing rad and chemo, I ate NOTHING by mouth after the first couple of weeks. It all went in through the tube. I never had dehydration problems because I put lots of water in vis the PEG, not only to flush after every feeding, but in between too. One hint, if you have not already figured it out, NEVER use water any colder than room temperature because it hurts like the dickens. This is the Voice of Experience speaking.

Even though I did not eat orally, I did do the baking soda, salt, and water rinse many times daily and that may be why I never experienced any infection. Or maybe not.

The only thing I would change is to wish someone had told me to keep opening my mouth wide, many times a day. Not eating, I did not do that and today am not able to eat a big sandwich, for example. So I would say along with enough water, opening his mouth wide every single day is the most important thing your husband can be doing right now. Other than mentally fighting like heck!

Keep us posted.

What Joanna says about opening his mouth wide so he doesn't get trismus is very true, but he must also keep swallowing to keep the throat muscles working. He should take as much liquid by mouth as he can tolerate. If that no longer works, he must continue to swallow to keep muscles moving. Lots of water helps reduce the side effects of the radiation so drink lots of it. He also need at least 2000 calories a day of nutrition so keep a record of everything that goes down and stays down. Also keep records of what comes out. Constipation is a big problem that will have to be addressed.

I wish there was a magic pill to make this easier for him. Keep his doctor apprised of everything. It's a rough road but doable.

Tare care,
Eileen

mom,

I did not have a tube so I was forced to drink by mouth the whole time and I still got a tight jaw/mouth during Tx. At one point I remember everything hurt sooooo much I would write my wife notes because I couldn't/wouldn't open my mouth to speak. In addition to voluntary mouth stretching, I found "controlled" yawning helped me a lot. Controlled meaning I wouldn't let my yawn open my mouth to wide in the beginning and eventually I could have a BIG yawn and no feeling that my mouth was going to split apart. Not saying any of these suggestions will be easy but they are very important to follow.