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(11 replies, posted in Introductions!)

Charlene--

I, too, am very close to my father. My only sibling is 11 years younger than me, so I was an only child most of my childhood. I know exactly how you feel-- I generally don't talk to other people about how I'M feeling about it, but occasionally it's really cathartic to just tell someone that you're actually not ok when they ask you you're doing. It breaks my heart to see my father so sad and my mother feel so helpless, and sometimes I feel guilty that I haven't had children yet. But I also know how much it upsets him to see me upset. And other people-- my father's friends, mostly-- can't keep from crying when they talk to me and I'm not really sure what to say to them. That, or they ask me a lot of questions about him because they don't want to upset my mother; it's like it never occurred to them that it might upset me to talk about it. But I know they mean well, and it means the world to me to see that so many people love him and care about him. That has been so wonderful to see.

All we can do is what we can do, I guess. Just take comfort everywhere you can.

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(11 replies, posted in Introductions!)

Kris--

The first visit to MDAnderson was in August this year. He was considered unknown primary. At that time, they consulted to decide which specialty of the hospital he should go to: unknown primary or liver or something else. I think they do this with cholangio since it is a difficult diagnosis. From that point on, it was pretty smooth-- especially considering how busy they are.

He is on a plane to Houston right now, and I know there have been some scheduling SNAFUs, and the doc he has been seeing (the male Dr. Brown) is leaving the hospital, so that's probably the cause of some of it.

I would warn you of one thing: since we live in NW Arkansas, and my father enjoys his work and has been able to continue working, he decided to take his chemo here. He got the protocol from Dr. Brown and worked with a local onco. However, when some complications arose (mainly the ascites), my mother called Dr. Brown and they told her that Dad wasn't his patient as such-- the onco here is his doctor on a daily basis, since he's not actually taking the treatment in Houston. It makes sense; I think my parents were just under the impression that the docs at MDA would monitor him throughout. This may be totally different if a big hospital like Baptist works very closely with them.

Caroline-- I have looked at your blog, noted your good experience with the Xelox and with Zoloft and have passed this on to my father. I worry that some of his difficult appetite might be related to some depression, though on his better days and in the mornings, he has a very good, if slightly morbid, sense of humor about it. The bad days following the recent surgery were just very bad. As for treating the arthritis, the maintenance dose of prednisone and the hydromorphone seem to be taking care of a lot of it.

Whatever works...

A

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(11 replies, posted in Introductions!)

Thanks to you all for your encouraging words. This is such a tough thing for all of us.

C-- It's funny how many parallels there are in our stories. My father will go back to MDA this week for follow up scans and I've asked him to ask about the work they're doing there with Xeloda and Oxaliplatin, especially since I've seen some success with it on this site and in the clinical reports. Keep us posted on how he is responding.

You will certainly be in my thoughts.

A

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(11 replies, posted in Introductions!)

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.

A