Hello to everyone. Thank you to those who responded to my introduction post.(I have tongue CA). Thank you for encouraging me to do the radiation and chemo. We got about 4 different opinions and no doctor could really give us a firm opinion either way about doing radiation. So ultimately it was up to me to do it. This website helped me to be realistic about what it is going to be like, as well as give me encouragement to go through with it. All I have to do is look at my little kids, and I know I needed to do the radiation.
So I had my first treatments last week. The Cisplatin has not been too bad. I got one dose of Amiphostine and had a violent vomitting reaction about 45 minutes after the subQ injection. Thank goodness I wasn't still in the mask! I had to be hospitalized, but once it wore off I have felt better. So no more Amiphostine.
The radiation is going OK. I am getting more used to the syringe in my mouth, that is the worst part. I've only had 3 treatments and I already have a sunburn on my skin and some pain in my tongue. I thought I would have 2 weeks or so with no effects. Guess not. And food tastes terrible. Not sure if that is radiation or chemo. Eating is a struggle. I already have a PEG, but I still feel sick even putting Boost through it.
I know it's going to be a long road, and I am just trying to do one day at a time. It's hard when you know you are going to feel much worse than you already do. But I'm trying to keep my chin up! And thanks again to all of you who have been through this and take the time to write to people who are going through it now. I spend a lot of time reading people's posts and I feel it is more informative than going to the doctor!
-Laura