(This website is hard to navigate)
anywys, does anyone know perhaps (paker 66)
if surgery or chemo/radiation usually comes first in the treatment of oral cancer or the tounge

I'm sorry you feel the web site is hard to navigate. In the year that it has been up, it has gotten rave reviews, and been nominated for several awards. You are actually the first person to make the comment that the site is difficult to navigate. If you have suggestions for its improvement send them to me by email. We are always interested in improving things. Anyway, there is no rule for what treatment comes first. It has to do with the size and location of the lesion(s), degree of metastasis, and the personal and institutional philosophy of the doctor and the institution treating. The treatments are as individual as each of us and each disease.

When will things start getting better? I finished my twice a day radiation treatments for base of the tongue cancer last Friday, and, perhaps naively, I thought that I would start feeling better. Actually I feel worse now than when I was still in treatment. My neck is red and burnt, which I can handle. I eat through my PEG, which I have grown used to, although it does get quite boring repeating that routine four times a day. What has me feeling bad, however, isn't really pain. It is more of an internal feeling of just not feeling good. Of course the cans of formula, even though containing fiber, are still constipating, so I have to balance them with the right number of laxative pills. The constant spitting of mucous can really get annoying and disrupting to sleep.
So when , if anyone knows, does one start feeling like a person again. Normally I would want to go to the office more, hit some golf balls, or at least go to the park and putt, but today I did not even leave the house.

Digtexas

Hi Digtexas-

I think you should go easy on yourself-radiation therapy takes an enormous toll on people and the incidence of fatigue associated with treatment is high. Sounds like your body is "reeling and healing" and maybe just needs time to rest.Most of the folks Dave and I have talked to in the course of deciding his treatment plan have said they really didn't feel like themselves again for 6 months post-radiation and that it was a slow process.

Tube feeding, although functional for nutrition doesn't exactly add pleasure to your senses or feel like a gourmet treat especially when the counterbalance is a laxative cocktail.Dave and I talked to a guy this week who got so bored post-op he started putting chocolate shakes (real ones from the ice cream stre) in his tube and other forms of chocolate. Now, I am in no way advising alternative options to get excited and possibly clog your tube!

Are you sleeping okay?

Give us some more info about what your days have been like.

Hang in there,

Kim

Digtexas,

I'm sorry to hear that you weren't prepared for the recovery period. As Kim said (depending on you as an individual), it will take about 6 months for that feeling of being human again.

There are two things about cancer and it's treatment that some people don't understand. The first is that this is all cumulative and you get to a point where you feel you've hit a "brick wall" - literally. You can't expect to bounce right back. The second is that we take some basics about our bodies for granted. But when it is assaulted by foreign toxins and radiation at a level our bodies don't take kindly to - our bodies don't function as they would normally. My mother has learned the hard way how being dehydrated can affect so many things.

I'm with Kim - go easy on yourself. If ever there is a time for one to be selfish - this is it. Concentrate on yourself and doing things to help your body recover. Even if it means sleeping. It's your body's way of helping you to heal.

Best wishes,

Cynthia

I`ve had a feeding tube for a year, and actually asked my wife if we had any vanilla for my milkshake, I`m also quite smitten with Blue Pepsi, it must be the color.......I have coffee and green tea, and prune juice helps with constipation.........I`m hoping to be eating again soon, but won`t taste anything, since my new tongue came from my chest, but i do remember the taste of food..........go easy on yourself........it takes time

Does anyone have an opinion about whether Dave should get his PEG tube during surgery next Monday or prior to the start of radiation 6 weeks later?

Packer-the new tongue info is facinating (my nurse side showing). How does that graft work?

DigTexas-hope this day finds you feeling better.

Dave and I are on the anxiety ridden pre-op countdown until Monday. I like Packer's idea about a portable teddy bear/pillow-Dave also has quite a dry sense of humor so it needs to be the RIGHT symbol for him...nothing cutesy or tame. Should give me something to focus on this weekend.

new tongue is a pectoralis flap..........also floor of mouth, since it`s my chest, I can grow grow hair on it.......but not much else.................also, was supposed to be eating again 10 days after last surgery in March..............but, I guess they were out of chins........once the Plastic fellows get hold of you it seems that, by the way, lets do a little more surgery............as far a peg tube......i got through radiation without one, but coming from surgery into radiation is like a double whammy

Thanks guys. I really appreciate all of your support. I was so strong from the beginning, always accepting that I had cancer, never asking " why me ?", always very stoic about the things that I had to go through, like getting a feeding tube and twice a day radiation. Everyone has been amazed at how I have handled everything like a champ, and honestly, I never felt depressed. So many people have been so nice and caring and loving that I was kind of uplifted by the whole experience.
But now, after the treatments are through, comes this feeling poorly, bored to death by pouring these cans of formula into the tube 4 times a day, tired of sitting around watching TV, but not feeling like doing anything at all. I need to get to the office if only to gather some more info. for the dastardly insurance companies, and even that seems like to big a chore at present.
I guess that I just did not realize that now came the hard part. I did not expect that I would feel worse than during treatment. I thought that within a matter days, I would start improving. So, I guess for the first time since I was diagnosed at the first of July, I have let this stuff get me depressed. My wouldn't it be nice to just sit down and enjoy a meal...the stuff we used to take for granted.
Thanks for your support,
Danny ( Digtexas )

For what it`s worth, I had my first surgery last sept, another one in March, and really didn`t start feeling the psych stuff til after the surgerys........i think once all the physical stuff is over, the mind has more time to be depressed...you`re so busy with treatments and surgery and healing........then whammy, the depression sets in..........good many of us on the board are on antidepressants....i finally gave in, in April, they aren`t so much to make you happy, but to help you cope alittle better, with all you`re going through