Michelle,

Unfortunately, the long drawn out diagnosis of oral cancer is pretty much the norm. Ironically, the five year survival rate is about 90% if caught early but most of us are diagnosed after lymph node involvement. The message that needs to get out is early detection saves lives. Brian Hill, the founder of this site has crusaded for this cause and spent hundreds of thousands of dollars of his money to put all this together. If there ever was a time to request donations, it is with family and friends as you travel this road you and Dan are experiencing right now.

I, too, had a base of tongue primary although it was only about 2.5 cm on the left side with 2 lymph nodes affected on the upper left side of my neck. I had a lump the size of my thumb and I had been to many doctors for about 7 months. I was fortunate because I kept pushing until I could find someone to just remove it. I wish I knew what I know now. I had a plastic surgeon remove the lump and it turned out to be a severely infected lymph node with metastatic SCC. He first told me he thought I had tuberculosis but the path results confirmed cancer.

The PEG is a very rough thing for a lot of us. My teenage boys liked me to show it to their friends the first couple of weeks and our church youth director begged me to show his wife (she freaked... ) but other than that, I kept it pretty low key. There is an option of a device called a MIC Key. It is designed for more active people and only protrudes about an inch or so with a valve in the end so it doesn't leak. That was my biggest issue with mine is when it seeped out on my clothes and I could smell that sour smell all the time. Anyway, you get two tubes that plug into the piece coming out of the skin when you need to use them. One is great for feeding (slightly larger diameter) and the other works well for liquid medicine.

I had a small stomach that was higher than most and from the beginning I always felt full and when I put stuff in there, it usually came back up in short time. As I lost weight, the bulb inside kept tugging and was always a little uncomfortable. We let some water out but it still wasn't what I would call unnoticable.

If nothing else, use the tube for water or pediolyte to keep the electrolytes balanced. This will be one of the most noticable and potentially life-threatening problems other than white and red blood counts. Also, put some Robitussin in the tube every 4-6 hours and the thick goo in the throat will thin a bit. Boost Hi-Protein or Boost Plus has electrolytes, too.

I ended up losing 70 lbs and had to feed intravenously and because my creatinine was a bit low after the first round of Cisplatin, they kept me on IV fluids at the rate of about 3 bags a day for many weeks.

The tube thing may never change. I never got used to it as my new buddy. Hang in there, things will probably get worse before they get better.

Ed