Hello all-- I have been reading the site for months now, ever since my father was diagnosed with CC in August. There's been so much great information and inspiration for me and for my family. But I haven't really been ready to post until now. We've had some major (not necessarily cancer related) setbacks that have left me not so sure where to go from here...first I'll give the background...Since I've never posted, it's kind of a long one...thanks for bearing with me...
My father is 56. In August, after months of tests and scans, he traveled down to MD Anderson (we live in Arkansas) and was told that he had CC, and that he actually had around 6 or 7 tumors on the liver, the largest being around 8 inches in size, and a few swollen lymph nodes (no biopsies done to confirm metastases there). However, the small part of his liver that was functioning, was functioning well. Needless to say, he was declared inoperable and he came home to pursue a course of Gemzar and Cisplatin.
(Thanks to this site...) We did contact Dr. Jenkins but he was unable to perform surgery. Meanwhile, my father started the GemCis and immediately felt better. He was able to reduce the ascites significantly with diuretics and started a maintenance dose of prednisone. His attitude was better, he was eating, his weight appeared to be stabilizing, and the only really distressing side-effect of the chemo-- constipation-- was starting to work itself out.
The week before xmas he was rushed into emergency surgery with a bleeding ulcer in the dudenum. It had also eaten through an artery. He was in ICU for days. The ascites came back immediately and eating has been difficult again. He's become much more depressed, but he has been trying. Today, though, the doc said he wouldn't give him chemo because "it's clearly not working." But the stomach ulcer was declared a side effect of the ibuprofen from the arthritis, the ascites are going down again with the diuretics, and the only CT scan since diagnosis shows no major changes. In my book, stable disease IS a good result, and he was feeling so much better before the surgery-- something both he and the doc seem to be forgetting. This was surgery anyone would have difficulty recovering from; the fact seems to remain that no one knows how he's doing until he has a more detailed scan at MDA, and while he doesn't need false hope, he also doesn't need pessimistic speculation.
I live about an hour away, and I try to spend as much time as I can down there helping out (my 16 year old sister lives at home-- I am 27-- and my mother has her own medical woes), but I'm not sure what to do now. Everyone here has sounded so optimistic but I have no idea how to deal with someone whose outlook is so bleak. He's willing to try clinical trials, and he's due to go back to Houston later this month. But I'm not sure what to do in the meantime except go to therapy to take care of my own poor way of dealing with things.
So that's it, really-- a long, drawn out story, and something that you may not have any advice for, but it's good to get it out there.
Thank you so much for all the advice and support that this website has offered-- it's been a constant source of encouragement and hope.