Topic: Hello to All !
My name is Rhonda and I am Bob's wife. Bob is a very sick fellow right now, he is beginning to be treated for metastatic chlangiocarcinoma. Our adventure started with a emergency room run on New Years eve of 2004. He had pain that moved around some but was mostly in the right shoulder. I of course thought of a heart attack, he has had two prior heart attacks and is only 47. Well he did not have a heart attack, but they gave him pain meds and advised him to follow up with his primary doc. We got him an appointment and the doc ordered a full blood panel, because we didn't have any recent results. Tests showed extreme elevated liver enzyme levels, about 3x normal so we were refered to a gastronologist. Gastro doc preformed ERCP and pretty much immediately diagnosed cancer even without biopsy results in yet. We did get the results which confirmed cancer shortly after. We were then refered to the University of Cincinnati Hospital which has a pretty extensive heptobilliary dept. The surgeon we met with told us all the potential pitfalls of surgery but felt we should try due to my husbands age and general condition. On March 17, 2005 Bob had a whipple procedure, they did not touch his pancreas or liver. They did remove his gall bladder (which we were told was hardened by scar tissue) and a large part if not all of his common bileduct, they rerouted using small intestine to replace duct to liver. Bob did pretty well for awhile and then started chemo and radiation. He was on continuious infusion of 5FU and received injections of interferon as well as regular infusions of mitomyison. All the chemo and radiation was really rough for him he was hospitalized a couple of times during treatments and had to do neupogen a couple of times. He got through all that pretty well and only had to miss two treatments due to illness. Bob was pretty good for about a year then all the sudden it seemed like his enzymes got high again and he started to jaudice and get fevers. Bob had billary drains put in early last year, first only two and eventually three. The drains helped for awhile and all we had to do is keep up with the change schedule which is about every 8 weeks. Well right before Christmas Bob was sheduled for a change and instead of a change the Doc flushed out the drains and sent him home. Bob got sick all through X-mas he felt awful and looked awful and finally started a fever, I took him in through emergency and he was admitted for about three days. Mostly all they did was antibiotics and change tubes, the thought was that he had a infection. I took him home expecting him to gradually get better. Wrong answer! He was back in the er the following weekend with fever, throwing up and diarhea still as yellow as ever! He went in on a friday and they ran a MRI and did a Ultrasound and lots of blood work. On Monday they again checked his tubes by cholangiogram. I was available when the doc finished, but he was acting a little strange and didn't seem to want to deal with me, so I went home. I had sat all day to hear what was up, so I wasn't happy when I left. I got home and had a call on my machine from Bob to call him. The Doc after I left read his MRI and told Bob that it looked like the cancer was back and was now in his liver and peritoneum. He needed to confirm this info by biopsy, but he said it did not look good. I was really unhappy to say the least that this Doc dropped this bomb on Bob while he was alone. We talked it out and Bob was due for meds thankfully and could just go to sleep for the night. Biopsy was done the next day and confirmed cancer, more than one spot in liver and a large mass in abdomenal wall. Surgery is not an option, my husband's surgeon refered us back to his oncologist for chemo. That's where we are on the journey now. Bob is taking Tarceva orally and receiving regular infusions of Gemzar. He is an emotional wreck. I worry constantly that he doesn't have enough strenght to fight this fight again, he just doesnt have the reserves he did when he started down this road. I would appreciate any ideas to help me feed him with out triggering nausea,he will throw up even water at times. He feels really bad and looks worse any suggestions will be appreciated. I was amazed to find this site, I found it by accident! I was on the rare cancer site, but it seems like this is a more actively posting group. Bless You All,