Feb 07, 2014 - 2:14 pm
Well I just returned from a trip to MD Anderson. I had been having trouble getting my insurance to approve my 6 month scans, so I went to see an oncologist there that specializes in the rare forms of kidney cancer (mine is unclassified) in order to find out my chances of recurrence and how often I really needed scans. He told me the chances were 40% over 10 years and, when I asked what kind of treatment would be used if it did return, he said that the FDA approved drugs are not effective on the rare types. Well the next day I went back to see him for my scan results, and he broke the bad news. I now have mets to the lungs. So much for my 40%. He says that I do not qualify for any trials. He is recommending I try Sutent or Votrient. He said he was leaning toward Votrient because it is better tolerated. He recommended 2 oncologists closer to home. I live in Athens, Ga and work in Atlanta. I was surprised that one of them is in Athens. The other is at Emory where I had my surgery. Both are graduates and fellows of MD Anderson but neither specialize in kidney cancer but we don't have any in Georgia. I have an appointment with the Athens doctor Monday. We will see what he thinks. I'm starting to search for posts where people have discussed both drugs to learn what I can about side effects.
I'm concerned about trying to work if the side effects are rough. I'm hoping they will let me work from home until I see how it goes since my daily commute is 3 to 4 hours a day. I don't even know if I want to tell people at work. I know people feel awkward, not knowing what to say.
I haven't fallen to pieces yet. Maybe it just hasn't sunk in or I'm tougher than I thought. Right now I'm up for the fight, but I'm letting you all know that I've suffered from cinical depression for many years which is right now under control with medication. But, don't be surprised if my posts get gloomy on bad days. Just bare with me.
One more day on the roller coaster. Have I ever mentioned I always HATED roller coasters. They scare me. I once saw an actor on TV who was talking about a period of time she suffered from agoraphobia, afraid to even go out of the house. After therapy, she learned to say to herself: "Do it afraid." So, scary or not, I'll do it afraid if I have to.