Hello,

I understand your frustration. I've just had my fourth surgery on Dec 7th since April of 2004. Mine, too, began as leukoplakia on the bottom right side of my tongue. It was 10 years later before a biopsy was positive for cancer. I, too, am a non-smoker and non-drinker. Mine, too, is squamous cell carcinoma. I did not have to have radiation after my first two surgeries. My third surgery was to remove a lump in my neck with it showing in one lymph node. That was summer of 2005, followed by the radiation to my mouth and neck. The radiation was focused on the right side of my mouth where the cancers have occurred, to my neck, and to a lesser degree around to the left side of my mouth. A PET scan in February 2006 was a good report. Yet I had another biopsy in November that was positive. My doctor tells me that my immune system is not fighting the cancer cells when they return. I have had active Epstein Barr virus off and on since 2003 which means a compromised immune system.

My case is always taken before the Tumor Board in the city where my doctor practices. The choice of chemo was discussed in 2005. The studies showed the type of chemo was much too harsh as it would have to be given at the same time as the radiation. The radiation may have to be stopped for a time because of the harshness of the chemo which would nullify any effects the radiation had done to that point. It was not advised, and my husband and I agreed. My doctor has told me that there isn't a chemo that is so effective for this type of cancer. My choices this time were to try Accutane. Studies have shown it to help work as a preventive measure; or I could just keep a close watch. After researching the Accutane and possible side effects I decided not to go that route. I had started using glyconutrients in the summer of 2005 to help boost my immune system. I had gone to a maintenance level after my radiation. I now think that I need to stay at an increased level. My doctor was quite receptive to my choice. By the way, my cancer this time was superficial, clean margins, and bone was not involved.

I know where you are coming from. I would encourage you to research glyconutrients on the internet. It is truly baffling to have it to keep returning and not be able to get a handle on keeping it under control. We are kindred spirits as we share our common experiences.

Cathy