Postby Felicia » Sun Aug 04, 2013 9:05 am
Just wanted to give an update on my husband's trial. He is doing the HAI direct infusion at MD Anderson. Cycle is 28 days. Day 1 is HAI of irinotecan directly to the liver for 48 hours. He has to lie perfectly still during that time (inpatient). After they pull the line, he lies still for another 6 hours so it can heal up. Then Avastin through port for 1.5 hours. Whole thing lasts 4-5 days in hospital. We call this the "big one". Mid way through he does another Avastin systemically through his port. This is done either in Houston or home town. It's just regular clinic infusion, no hospital stay. We call this the "little one". Then do it all over again every month-ish. After 2 cycles they do a CT scan to evaluate if it is working.
He had the first Big One, but also caught some sort of chest cold at the end of it. This kept him down for a week. They decided to cancel the Little One that cycle due to his low WBC and RBC counts. For a while there he could barely walk to the bathroom, bedroom, living room and back. He was so worn out. He saw pulminologists and did all these lung scans to make sure it wasn't something horrible keeping him sick. THankfully it was determined that it was a simple cold. He had the 2nd Big One on July 25th. This time no illness with it, but he is pretty knocked down still. Not as bad as last time, but he has zero energy. Nausea is bad, too. This time he has had some blood in his stool which took us to the ER. That stopped and his blood counts seemed ok so they did not admit him. He follows up on Monday with his surgeon to do a scope and see what might have caused the bleeding. He is supposed to do his Little One this week, but I'm not sure if they will actually do it or not because of this issue. They don't run CEA until right before you are to do the 3rd cycle. They will do a CT scan then as well. So, you aren't supposed to have any data on whether or not it is working until then. Well, with all of this extra blood work, they did run his CEA. It is up (250 previously up to 309). Soooooooo, not sure if it's really working or not. Seems like it's not working and I hate him going through something that isn't doing anything. He wants to wait for the CT scan to know for sure. He will do that August 20th. We should know on the 21st the results.
Anyway, just wanted to send an update. We did learn from the doctor that many patients have done this 20+ cycles and a few have done it 40!!! So, it does work for some people which is encouraging.
I'm sure on the 21st we will learn of other studies that Michael can do and I will pass anything we learn along.
Felicia