I would ask for a modification. Either weekends off, lower dosage, or other kinds of break days. Did you get a second opinion?
The way my oncologist talked about it, they like to plan for 7 days a week then if it becomes a problem, we will go to weekends off. I want to try to do it the way they prescribed it if I can. I'm not sure why it's different but I will ask at my next appointment because both doctors I went to before deciding on treatment had the same protocol except I never asked the other one exactly how many days Xeloda vs how many days radiation. He said it would be happening at the same time and I didn't realize there were 5 or 7 day protocols that were different at the time.
When I had mouth sores on other chemo, I found it really helpful to rinse with water and bicarb soda, then apply a bicarb soda paste directly to the sores.
I have been doing the baking soda rinse with added salt. But didn't know about making the paste with it, so thanks for that advice Rob, I'm going to try that!
I have 6 weeks of radiation (with two national holidays, 28 sessions actually does start on a Monday and end on a Friday), and am supposed to take Xeloda 7 days per week. By my math, that will be 40 days. So far I just have some nausea and fatigue. But I am only 4 days in. Still lots of time for it to get worse! Lol.
I'm glad to hear someone else is on a 7 day regimen also. I was worried that maybe I was doing it wrong this whole time somehow, even though I had family with me and we all knew that we heard 7 days a week and the nurse consultant that called me about the prescription told me the same. I even went back and checked my notes then counted all of my pills. I actually have enough for 42 days, so a 6 week supply. I don't know if he wants me to complete the extra days after radiation is complete but I will ask that at my next appointment.
Hopefully it won't get worse for you JTS. Some people don't have any issues with it. I was planning on being one of those people. I think maybe I'm more hyper aware because I read so much about everything and try to know what to expect. I think if you haven't had nausea yet, then you're probably not going to have nausea at all. I had it at first but figured out that I needed to keep food in my stomach and not let myself get empty.
The diarrhea is controlled well with Imodium so far and the mouth sores just started but the mouthwash seems to be helping. If you haven't already, you may want to mix up a bottle of water with a spoon of baking soda/bicarb and salt. Some people leave the salt out. I'm not sure if it's needed. I read to swish that every time you go to the bathroom. I got lax on doing that and was only doing it about 3 times a day. The thing is not to let anything get away from you. If you see anything, call your oncologist and get right on it so it doesn't get worse. I noticed a couple of red places on some of my fingertips this morning. It reminds me of when I was a kid and would hang onto the side of the concrete swimming pool in the summer and my hands would get sore. If you haven't already, be sure to keep your hands and feet well moisturized with a lotion or cream without alcohol in it. I do it at least morning and night but should probably try to keep it on more. I don't care for the feeling on my hands and end up washing it off so I can function but it may just be the brand I have leaves a sort of film that feels bad to me.
Right now I'm just using aquaphor on my skin but I might be ready for something with a numbing cream in it before long. I think I worry more on Friday because I know I won't be seeing the doctor for two days. But weekends at home without having to leave my house are wonderful.