I had to join this forum after reading so many responses from you all. I was diagnosed with base tongue SSC, Stage III a couple of months ago. The PET scan showed a "light" spread to the nearest lymph node. I immediately began juicing, increasing supplements and after much study, I decided on Proton Therapy at MD Anderson in Houston (we are from Colorado). When I was told they wanted to include chemo as a boost. I turned it down, and they then recommended Erbitux, which I elected to do. They wanted to have me included in a clinical trial, which I refused when I found out that I would have no choice between Proton and Photon. I came down here for proton. Could have stayed in Colorado for photon. Became quite ill for 2 1/2 days on first, double dose of Erbitux. Then once a week for 5 weeks (single dose). Start Proton next Wednesday. Looking for anyone who has used both Erbitux and Proton therapy with a similar diagnosis. It is wonderful to be able to participate and share our experiences on this forum.

Welcome, Robin.

I have had both Proton Therapy, and Erbitux, but neither together for the same treatment. I've posted previously about the two, as well as others, if you care to look under the search function or want to ask.

Good luck.

Welcome to OCF, Robin. You have found the best site for to help you get thru your battle with OC.

Our group is made up of patients/survivors and caregivers. Most patients here have received IMRT. On the main OCF pages there is so much info about anything and everything to do with OC. Here is a link to read about different types of radiation. Even though most have not had proton therapy, we can still help you with info and support. OC treatments can be difficult. Many will lose their sense of taste (dont worry its only temporary) and most have experienced a very sore throat sometimes even losing their voice. I lost mine for about 2 weeks.

The very best thing you can do is to eat and drink enough every single day. If you have been reading posts, you probably have noticed Im a broken record about a patients intake. You should begin immediately pushing to take in at least 2500 calories and 48-64 oz of water daily. If you can do better and get 3000 calories daily it will only help you get thru it a little easier. If you havent already started eating all your favorite foods, its a good plan to start right away. You dont want to go thru rads with cravings.

Best wishes with everything.


PS... Ive sent you a private message (PM). Click on the tiny flashing envelope next to the My Stuff tab. The info in the link will help make navigating the forum easier and it gives you step by step instructions on adding a signature.