Hi Julib,
I just received your message and it seems we are in exactly the same place.I rarely go on to the internet because it brings you into the reality of cancer and it seems to bring me down. It's nice to know that someone else is in the same place. We are extremely lucky to not have our cancer spread and I feel very good about this new drug that seems to be working well with rcc.
I started my first cycle on Sept. 7th and was able to tolerate 50mg for 16 days and then my pancreas had a rise in lipase. I had severe gastritis and ended up in the hospital with severe chest pain. I have had to stay off of it for three weeks until my pancreas returned to normal. I went on 25mg for two weeks and yesterday I started 37.5mg. The side effects don't seem as severe this time. I notice it mostly in my mouth. You are lucky that you have been able to get as much sutent in your body. I was on the fence about doing it at all. I was given a packet to read and the side effects really scared me. Now I realize it's not as bad as I thought because I am closely monitored.
I am treating at Dana Farber in Boston. I had my kidney removed at Mass General in Boston. Yhe surgeon was excellent. He referred me to an oncologist at Mass General who is a sutent guru.
He painted a dismal picture and I got a second opinion at DF. I like my new oncologist and she was in agreement that the sutent regimen was absolutely the way to go. I too hope the drug works as they hope. I have gone on with my life but cancer thoughts jump into my mind frequently.
I'm sure we'll both be fine we just have to keep positive thoughts in our head and enjoy our life!!!