[michka]

Thank you for thinking of me.
Last week I noticed that the color of my urine turned dark and I started itching all over. I called my onc who sent me for an echo. A bile duct was clogged. Nodes lower than the liver were pushing on the duct. They sent me to the hospital as an emergency and the next morning they put a stent in by endoscopy.
I was so upset because of course my liver parameters had risen very high and I was just thinking of my clinical trial supposed to start the next Wednesday. They told me the parameters would go down very fast and not to worry. I suffered a few days after from what they call a slight pancreatitis. I am fine now. I don't know what the implications of this stent are but it is a secondary question for now.
Then last Tuesday as I was walking out the door with my suitcase to take the train to the south of France they called me from the trial center saying that they did not have the slides to retest the HER2 factor and had to postpone the trial to the 19th. I was crazy. They said it would take them 3 days to get them from the hospital where I had had my liver operation. I had really insisted that it was difficult and that I could take care of that. They laughed at me. I wrote a reminder to them 10 days ago asking them if they had the slides. 3 weeks after they requested the slides, the day I was supposed to walk in the door they realized they didn't have the slides! I was so upset. They had the nerve to tell me that if I wanted I could come for a standard treatment right away if I did not want to wait until the 19th.
I am so afraid to have another problem before the 19th because I am waiting too long. AND I still don't know in which arm I will be. On the other hand my liver parameters will be back to almost normal so I figure it is better before starting any chemo. I didn't even have the possibility to inform the clinical trial hospital about the bile duct problem. So the mess has nothing to do with that.
So not much news. I have pain in my sternum I manage with tramadol.
It is not a bone met but a node pushing behind it. For this trial I had to do a bone scan and a brain MRI that were ok.
I don't have much confidence in traditional chemo for me since it never worked. That's why I am risking so much in fighting for TDM1. I still have hope.
I read the posts every day on our site. I am so sorry that there are too many sisters going through tough times. My heart sinks each time I read bad news. But for the new sisters on the site they have to realize that there are more and more of us going well and living good lives.
Love to all. Michka