Hi there. I am a new member to the BGJ 398 Trial at MD Anderson. After the 1st week, I was taken off for a week as my phosphates were too high and I was dehydrated. (Nothing like cancer treatments to get you dehydrated without even knowing it.) So we'll try again this week.
I already got some side effects: red sore spots on my tongue after I ate a tomato but it went away after swishing several times with baking soda and salt in warm water. The ball of the foot on a few toes hurt like there is no padding. Many foods are tasteless or off. Some are not at all affected. I got diarrhea for 2 days with some chills but no fever -- then used two times of Immodium which cleared it up. From taking Xeloda and having Hand Foot syndrome before, I soak my feet each night in warm vinegar water. I use roomy soft padded shoes. I'm going to check to see if they will let me use Biotin and RevitaDERM as I was recommended that before and it helped. So far, they have nixed hair vitamins.
I wanted to answer HamptonSarasota's question about how to get the genetic testing. A few years ago, MDA did it in house for me but they could only do it on 50 genes and nothing showed up. This time, I heard about the Foundation One in Boston from the head of the TargetCancer Foundation (for research for rare cancers including cholangio). So when I asked MDA surgeon who would do the actual test, sounded like they sent it out to one of two places, with Foundation being one of them. I asked for them.. They test against 350 genes. This trial is a fit for certain types of cancer, including ours, if they have the FGFR ones. Mine is FGRR 2. I have 3 other alterations but they have no targeted therapies yet.
To Patty, just FYI also. The Greek Isles many times are at a steep incline. Some have transportation; some not. If you do go, ask your host about which ones you can or can't do if walking up very long steep inclines are tough with this treatment. Hmmm, if Banks are closed, I wonder if the hotels and restaurants would even take your credit card?
Thanks to everyone for sharing tips and treatments and support.