Any Experiences With Adeniod Cystic Carcinoma

Hello, I have had ACC since 1990, going thru 2 surgeries, radiation, and chemo. Now this cancer, Adenoid Cystic Carcinoma, is in my lungs and my oncologist has nothing left he can do. I am interested in treatment centers that specialize in this very rare cancer. I would like to see what there might be out there to help me battle this. I am also interested in naturopathic medicine, herbs and other alternative methods, especially diet, since I am losing weight. I have to blend my food most of the time, and I know I don't eat nutritiously. If there is anyone out there that might be experiencing the same thing, please let me know as soon as possible. Thank you, Cecelia L.

Hello, I am hoping you are still on this site, since you put your message up about about 6 months ago. I also have adenoid cystic carcinoma. I have it in my trachea. I had it 16 years ago, they cut out some of my trachea, then I did radiation. It is now back in the same place. One thing about this cancer is it is rare and not much works on it. It usually comes back. But it is supposed to be a slow growing cancer. I went to Denver and have a great doctor there and I also went to Boston to see the country's top airway surgeon. There wasn't much he could do for me. I get core out procedures done to de-bulk the tumor, but that is all I can do right now. I dont know if I can help you or not, I also have info on herbal treatments if you are interested. I would love to be your friend, and I will pray for you. God Bless You. Barbara W.

I have adenoid cystic carcinoma of the salivary gland diagnosed May, 2006.  I had surgery but did not get clean margins.  I went to Seattle to the University of Washington for Neutron Radiation.   I want to know how I can maintain health through eating and nutrition as there is no chemotherapy to assist with this cancer.  I