Nothing really new to report as of yet.  I started on XL-184 Thursday - was at U of P from 9 am till 5 pm so as you can imagine a very long day.  Basically they ran a bunch of pre-tests and at 10:45 I took my first dosage (175mg) of XL-184 or god forbid the placebo... 

Preliminary testing from the week before (scans, mri etc..) did not show much change or anything that they would consider significant.  Only real "oh my feedback" we got was that my calcitonin level has increased from 850 in Nov to 1224 as of 1/15.  That is a significant increase and is a big factor in how they determine how this cancer is growing, so fully confirmed this is growing rather quickly so we are really really praying that I don't get the placibo but only time will tell.

Every day I wonder - oh what's this feeling, what's that feeling, is it from the drug or is it just my mind playing games with me???  Most likely I am sure a little of both.  I was up last night from 11:30 pm to 4:00 am with the "Big D" but again I get that so often already how do you know what it's from???  I have had heartburn the last 2 days; this is something I don't normally get so again "normal type of thing" or the meds.... See why it's so easy to drive yourself crazy LOL.

I go back to U of P on 2/4 so we just keep taking the meds and see what happens.  I need to really start looking into what happens next with my disability and try to figure all that kind of stuff.  I'm trying to get some resting time in as that part is still overwhelming, just being very tired all of the time and maybe try to work on getting some other things organized just in case.

I have started to see the love of support of everyone, family and friends walking around with a SUE logo either on a shirt, a cup, car magnet LOL and even a couple of Tat's...  Thank you all for the support and love.  Please keep it all coming, feedback, prayers etc...

 

Love and Peace

Sue