Jun 02, 2013 - 12:43 am
I have been reading this site for almost 2 years now (Sept 2011) when my husband was diagnosed with esophageal cancer at age 48. Over the years I have turned to this site whenever I feel the need. After slogging through this for what seems like an eternity, we are battered and rough around the edges and maybe now is the time for me to reach out. Many of your stories are our story. My husband, Paul, had trouble swallowing and after putting it off for months (yeah, I know...I tried) he went to the doctor. They went back and forth for a few weeks until finallly having him in for an endoscopy. We thought for sure it was just heartburn. However, the look on the guys face when he told us it was a tumor will forever be burned into my memory. It didn't really sink in (I went back to work!) until we started to read up on it and then the fear started. From that day until now, we really haven't had much in the way of good news. The cancer had already spread to 2 nearby lymph nodes so stage 3 at that point. From diagnosis to treatment was one month. He had full chemo (cisplatin/5 -FU) and radiation (33 rounds..) at the same time. The nodes were near so they could radiate the whole field. The first CT was clean, but we knew since it was in his nodes it could have spead so they put him on iritican. Unfortunatley, the next scan showed it had spread to his body cavity/pelvis region and more nodes (stage 4). After this they started him on a triple chemo of cisplatin/taxol/Xeloda (oral 5-FU). Of course he can't swallow the pills so he dissolves them in warm water. Insult to injury. He has been on this regimen for 7 months. He has 2 tumors in his pelvic region that light up on the PET scans but not super high but are good sized on a CT (4x5 and 5x6 cm). The problem now is that he is having a lot of GI problems. I think the chemo is just trashing his system and it is having trouble bouncing back. His blood counts were too low to even start his next month of chemo. We are at the point where we would like to get a second opinion on his treatment. We are at Ohio State University James Cancer hospital. We did have the doctor do a genetic workup of his original tumor to try to identify targeted therapy, but for now they are sticking with the standard stuff. Has anyone been treated at the Cleveland Clinic? We had an original second opinion there when he was first diagnosed so may try to go back there for another look. I would like to get him into MD Anderson, but they say they will not take anyone that is currently undergoing treatment. However, I am tempted to just send them his records and see what they say. We have been holding it together for our boys (ages 15 and 12) and we have gone about life as much as we can. Staying around the house when he doesn't feel well and watching silly shows and planning trips. Luckily, we have been able to take two big trips as a family since he was diagnosed. I believe these will stay with our boys as positive memories forever. My husband, of course, hates what is happening to him and it is hard for me not to go a bit crazy once in awhile too. However, our kids, lots of runs and walks, many supportive friends, 1 or 2 really good friends you can say anything to, and some humor in the house (our boys help with that!) keep us from going completely, totally insane.
I realize that this is a bit all over the place without any real insight or help for anyone...but thanks for listening.