kvolland

Anne-Marie
Along with everyone else I would like to welcome you to the group. We are a greatly positive group of people who will try to answer any question posed. And do not feel that there is a silly or stupid questions…..there are none with this disease. It can be such a roller coaster of up’s and down’s. My husband is an almost 2 year survivor of this disease. He had his surgery in June of 2013 and in May of 2014 was finally done with all the chemo and radiation treatment. Now it’s only anxiety before tests and scans.

Keep us posted.
KrisV

Hi Kate –
My husband’s stomach got quite swollen just before he was diagnosed. I used to tease him because it really looked like he was pregnant (guess I would have liked that better than the cancer diagnosis). Often times if the liver is not working well which is common with CC. This is because the liver becomes stiff and does to allow the blood to flow through like normal. Then the clear part of the blood leaks out causing what is know as ascites. It causes the belly to look bigger and it can put pressure on the other organs which can cause pain. Not 100% sure that this is it but the CT scan will show this. Also it can be easily drained for comfort.
Also make sure that your mum is having regular bowel movements. If not the constipation can cause so significant abdominal pain. If constipation is the problem, let me know….I have a bunch of different remedies for that.
Hopefully everything goes good today.

KrisV

Hello Deb –
Welcome to the best little family for support. You already have half the battle won by being able to have surgery. If you don’t mind me asking, where was the tumor – intrahepatic or extrahepatic? My husband’s was extra-hepatic (Klatskin’s tumor) and had a successful liver resection. He did traditional chemo of Gemcitabine and oxaliplatin for 6 months then 25 doses of radiation with continuous 5 FU infusion so I can’t say much about the pills but I know there are those on here who will jump in.

Keep us updated on how things go.

KrisV

Judy –
I don’t see this as giving up, I see it as going in a different direction. Now the goal is to keep him as comfortable as possible and at home. I know it feels like giving up. The hospice nurses will be wonderful support for you and Ron. There are things that can help with the HE but they will only be temporary fixes…..using lactulose which is a laxative that helps draw the the ammonia out of his blood. It might clear his confusion and sleepiness some.
I will keep you and Ron in my thoughts.

KrisV

Sammi –
This is such a hard thing and difficult to deal with, especially at this time of year. One bonus of this time of year is that families are often gathered together and makes broaching difficult subjects a little easier.

https://fivewishesonline.agingwithdignity.org/index.php

The line is to the five wishes online. Five wishes is a way for people to plan their end of life. It basically asks simple questions and gives samples of answers that can be used or a blank area where you can right in your own ideas. It covers things such as pain, who is to communicate for you among other things. It can be an easy way to start this type of conversation.

I hope this helps for you. I am sure that your dad is working is a form of denial, that as long as he is working then there is nothing wrong. I understand that a lot.

Hang in there. and keep us posted.

KrisV

I agree with Marion. It’s actually quite disgusting when doctors are like that. There is no reason for it either but still so many of the old school that think they are gods. I am so glad we only ran into it once while we were going through Mark’s stuff…..a GI do that I refused to see after that one encounter. It was obvious he didn’t like the fact that we were educated and asked questions he didn’t want to answer.
Patients aren’t really patients any more, they are consumers and need to research their care just as they would anything else they purchase. Knowledge is power. The internet is a wonderful tool also to gain that needed information.
Pooh on that doctor.

KrisV

Derin –
We have had a little trouble with narrowing of the bile ducts but so far managed to dodge any procedures, stent placements or anything. The only symptom my husband would have was an elevated temperature so off to the hospital we would do. Sepsis was the diagnosis. On MRI they thought there was narrowing (the GI doc) but our surgeon said no. He was hospitalized three times for this and then it stopped.
Mark lost all of his left lob of his liver and a good portion of his right. According to the GI doc we saw he has multiple connection spots from his bile ducts in his liver to the stump of the intestine and that only one appears narrowed. We took a watch and wait approach because we knew any messing around with the bile ducts…dilation, stents, etc would increase the risk of infection. Why replace one problem with another was our question?
Consequently they put Mark on Ursodial 100 mg twice a day and since then no problems. And now Mark is afraid to quit taking it even though he has been told he can. I don’t blame him and it doesn’t seem to be causing any negative effects so no one is pushing.

KrisV

Serena –
I know it doesn’t probably help much but I know your mother is not the first person I have heard of that they are never able to find the primary cancer. As a nurse I have dealt with a lot of cancer patients over the years and have worked with a few that have mets but no primary found. Everyone usually scratches there head.
What I will tell you is that one oncologist I met theorized that not being able to find the primary meant that they body itself had fought off the cancer by itself but not before it metastasized to another part of the body. He had absolutely nothing to back that up with but it sounded good to me.

KrisV