Hi Kiba01,
Did you have XRT or IMRT? If you had IMRT you should have some normal saliva at 12 months. I don't eat as much as I used to (which is a good thing) Almost ALL Americans eat too much anyway. I does take me a little longer. I am always the last one finished (my dad used to be the slow eater). I am getting my muscle tone back after a year and doing more physical things all the time. I did have a fair amount of fatigue the first year (that's why the govt. awards disability claims to cancer patients). I left thirty lbs. behind and that's ok with me. My food preferences have changed a little. I don't like dry things like potato chips, cookies and breads that much anymore. I prefer cream sauces over tomato sauces.

Hi Gary:

Thanks for your thoughts. I am trying acupuncture to increase my ability to swallow.

Kiba....Everyone here knows that I am not a big proponent of acupuncture as a means of regaining something that has literally been destroyed by treatments, so I just want you to know up front that my perspective is highly prejudiced.

But if you think about why you do not have saliva, it is because the cells in the glands that produce it have been killed by the treatments. I do not believe and have found no peer reviewed publication that shows that they can be regenerated by any means once they have been killed. That is a fact of life and no energy transferring (?) realigning of the chi in your body is going to make them grow back. For many like me that have acute xerostomia, this is a bummer, but my water bottle is now as natural a part of my hands as my wedding ring or watch. Living with lack of saliva is an adaptation that will be with you for the rest of your life unless they find some way to transplant (it's possible, don't laugh) salivary gland cells from any remaining glands you do have, or even other people (in animal trials now, but not promising). So my caveat to you is this. Do not throw too much money at this idea unless you find it produces results. One person I talked with last year was such a believer, that she had literally spent thousands of dollars at the acupuncturist, (who assured her it would take time) with absolutely no tangible results than what she would have had happen had she done nothing. By about 2 years out, what ever has come back is pretty much all there is going to be coming back.

Kiba, perhaps I can share with you my experience with acupuncture since I went for it for several months post rad/chemo treatment as this has been recommended in some books and others who claim that it can improve saliva and numbness of my hands. I chose a very experienced acupuncturist who was very honest to me saying that on day 1 it was impossible to revive my saliva glands through acupuncture. Rather he recommended Chinese herbal tea and I took it for many months without seeing any improvement. So I stopped taking it. As for my limbs, I felt some kind of relief when the needles pierced into my hands but by the time I left the clinic, I didn't see any difference. After about 2 months, I started going swimming and I found the exercise contributed a lot to improvong the nervous system of my limbs. I continued acupunture for about 4 months then quit when there was the outbreak of SARS in Hong Kong.
My advice is if acupuncture is not expensive in your place, no harm giving a try but don't think it is magic and it's definitely not worth spending a lot of money on it. Go to a reliable clinic with good sanitary conditions. Acupuncture has a long history in the Chinese medical field and is helfpul in some kinds of illnesses while its role in curing cancer is not yet verified.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi all. I am Melanie, sister to Linda, who has had two oral cancer surgeries and 6 weeks of radiation. The radiation did not kill the cancer, but her salivary glands and her mouth has been so sore that she has been on tube feeing since September 03. Having had what I guess is called "resection" in her left neck and a flap brought from behind left breast, half of her tongue removed, jaw split, etc. she says she feels like a "freak." Doubts she will ever again be able to eat by mouth and wonders if she can ever speak understandably again. The cancer was at the base of her tongue. I keep sending her the link to your website and hoping she will log on and share her fears with you and get some support. I think you are all SO COURAGEOUS!! I think I might just let the cancer have its way with me -- that the "cure" is worse than the disease. Of course I'm having my own mouth checked, too. We were both smokers for 40 years and drinkers also for a number of those years.

Greeting's Melanie,

Please tell your sister Linda it gets better. There are many members of this forum who have had similer if not more surgery than her. They are around to offer support and are living witnesses that people do survive and she can to.

The last thing she should do is give up. She might need some meds to help her mood and if she post's here she will receive a ton of support and experience.
This forum has been a lifesaver to so many people who had no place to go to get the information we need. Knowledge about treatments and side effects will empower her. We all suffer
during and after treatment. It gets better!!! I find it hard to believe I am coming up on my first year since DX. I will do anything to survive this diaease. Please encourage her to visit this website and read some of the post's.

There are some very good reguler poster's here who alway's give great insight about oral cancer and it's effects that have helped many people.

I can tell you that the people of North Eastern
Wisconsin will be educated about Oral Cancer. I am going to make sure that happens. It may take me awhile but "IT WILL HAPPEN" It's a goal of mine.

Brian Hill doesn't get enough "Thank You's" for creating and maintaining this website. I only wish I could help as many people as Brian has.

Don't give up!!!!!

Best Wishes, Dan

Hi to all those folks who shared their thinking on acupuncture. I tried a few treatments with no results.It appeared as though tha acupuncturist was experimenting. I have been making small gains in my ability to increase the foods I can handle. I thank you for your input, as it is nice to have support.