Brought home
- This topic has 33 replies, 11 voices, and was last updated 12 years, 10 months ago by
.
-
Posts
-
Dearest Boudreau, Please try not to jump ahead. I know, easier said then done. I have a son-in-law who went through a year of Interfuron for Hepatitis C and he has been doing well. He got his Hep. C from a blood transfusion when he was a child.
My parents never drank, even wine or smoked. I never drank (it didn’t agree with me) nor smoked. So, here I was taking care of Teddy for 6 years and 2 1/2 years ago I get another rare cancer called a GIST. Met with my new ONC yesterday (older one retired) and he gave me the news that because I now have ulcerated colitis that can lead to other gastro cancers. I just looked at him and said, “Well, I am not going to worry about it”. If there is nothing there right now, I can’t sit and worry about what may come. I am thinking of you and hoping for the best possible outcome. You never know how strong you are until “strong” is the only choice you have!Boudreaux: many prayers sent!
And I’m sorry, but I don’t think this cancer is going to be considered a rare cancer for much longer. I look at the growing numbers of new people on this site, plus hearing from friends that people THEY know have it. Unfortunately, but good for getting more funding to try to cure this.
I hope your scan and MRI turn out to be something other than CC. And you have every right to be afraid. I was terrified when I heard I might have cancer. I’ve always been so healthy-how could I have cancer? It’s a tough reality to accept.
I also come from a family of alcoholics. I’ve tried to hold it in check for years because I know it’s in my family. Every once in a while I would lose control for a night and “tie one on” but I never considered myself a really heavy drinker.
Since this started, my parents have both stopped drinking (my father’s liver is getting bad, and his kidneys are, too). My one brother tried to stop but wasn’t too successful. My 3 other brothers try to keep it in check, also. One only drinks on the weekend, one drinks rarely, and one almost never touches alcohol.
How do we get to be the lucky ones? I wish someone knew! If we ate river fluke it would be an easy answer. But how do the rest of us get this? And why is it so incessant? And why does it attack different organs? All answers I would love to have put into understandable English for us.
KrisThank you Kris, you wouldn’t believe what happened. Marion we are going interfuron, Im type 2 which responds nicely to meds for 6 mos. Kris, I go to my GI. Order cat scan and 10 viles of blood work in same day, then that night I get a call that I need an MRI. My bile ducts are inflammed and not clear. And there is extra stress on my liver, oh boy! What’s the odds of bile duct issues being so rare and my brother dieing and now something is up with mine. I’ll keep you posted. Prayers please, Im afraid.
Boudrea….Good wishes are heading your way. I am wondering: has liver transplantion been discussed?
Hugs and love,
MarionHi, Im Tom’s sister again from last post. Today I am going to my doctor because even though I have not had a drink in 14 years, I have Hep C. Seeing Tom go so fast, I am petrified. I do have fibrosis but the Docs said my enzymes were slightly elevated but not bad. Ive decided to go thru the treatment of interfuron and riboflavin (SP?). Because CC scares the hell out of me and I have to keep my liver healthy. Any other knowlege on this would be very appreciated. My BEST to all.
My brother, Tom, had cirrosis and Cholangiocarcinoma. He had stopped drinking for a couple of years then picked up alcohol again. He drank in January and died July 17, diagnosed May 31 with ascites (gone in 1 1/2 mos.) Doctors said Cholangiocarcinoma wasn’t from his drinking BUT when diagnosised, there was nothing they could do because his liver was gone. He kept quiet about picking up drinking so I dont think he knew if he was having symptoms or not. He did say though that he was angry that he never had a symptom or a warning, He knew drinking all his life off and on wasn’t good for him but a year earlier they told him his liver was fine in a checkup (he had not been drinking in a couple of years). When the doctors told him this cancer was not from drinking, he was relieved. But we all knew in our hearts that if he could of put down his drinking, he would still be with us. Both lobes had cirrosis and nodules of cancer, plus CC, he didn’t have a shot in hell. I would just recommend to keep your liver as healthy as possible and don’t feed it toxins because the organ is something your gonna need to fight this. I hope I made sense, alcoholism is our family disease and the denial just makes you shake your head. Miss him sooo.
This is what I have been told: Although, in some cases idiopathic (of unknown origin) the majority of Cirrhosis is caused by alcoholism or fatty liver disease. Hepatitos B and C are a major contributor for the development of Cirrosis and are also considered to be a risk factor for Cholangiocarcinoma.
Hugs and love,
MarionI don’t know about how much they are linking alcohol to this disease, but I will say that alcohol weakens the liver. I drank pretty often, but many times it was a glass of wine with dinner. My first surgeon called me an alcoholic and told me I have cc because of that. I never considered myself an alcoholic, but I definitely didn’t abstain either. Until March of last year.
I don’t think they really have a handle on what causes this cancer, except for the river fluke, which since I don’t even eat sushi, I can pretty much say I never came in contact with. But I do think that drinking might aid in the speed with which the tumor(s) grow.
KrisJust read through this thread and there were a couple of mentions about alcohol and its relation to CC. I too have the same question as no one could tell me why I came down with CC to begin with.
I was not a heavy drinker at all, 1x maybe 2x a week, 2-3 drinks at most each time. Yes, college was different, but I was never a binger every day or every weekend. Has anyone ever heard about alcohol and a correlation? I’m curious to hear.
Hi Nancy, sorry to hear of your Mom and husband. CC is so silent and fast. Im concerned with the silence of it all. I have Hep C and fibrosis and now am petrified on cancer taking over. Not only did I lose my brother from CC, he also had cirrosis and my uncle died the year before of cirrosis which turned to cancer. I want to be proactive being a mother with children. Getting ALTs checked and now am seriously thinking of interfuron/ribo. New drug telaprevir, been waiting for approval from FDA. Can’t wait any longer. There are drugs for Hep C and fibrosis in Europe which are not as harsh as interfuron but takes forever for approval in the states. Any info from people regarding any of these issues, greatly appreciated. I do not see much of people talking about the disease of alcoholism having anything to do with their CC. I there no relation with the two at all?
Margaret & Lainy,
I just posted on your other post Margaret. A get together with both of you this summer would be wonderful. I will keep it in mind. Lainy, let us know when the time gets nearer, when you will be there. Maybe there are others out there that would like to join us if it works out.
I hope both of you are feeling better soon. Dealing with CC and widowhood are hard enough without all these other issues. I’ve been pretty luck that way. Physically I haven’t had any serious issues. Mentally is something else tho’.
Take care ladies and know that I am thinking of you both and everyone else here, too.
Love & Hugs,
DarlaDear Margaret, I emphasize with the wrist! I just got my cast off today after falling on the ice and breaking my left wrist on Dec. 12th! I am now in a brace and doing physio – doc says we have a long way to go. I broke my right one 12 years ago (not as bad as one year!). We are quite the pair. My youngest daughter had on her facebook “So far in 2012 my mom is in a cast and my sister in a back brace – bring on 2013!” She thinks like you!
I hope you have people around to help because as you know one hand down is frustrating – everthing is more difficult to do and takes twice as long and I don’t know about you but I am tired before I even start with the emotional drain of widowhood. My daughter said maybe breaking my wrist was a way of me accepting help – I wish I had figured that out in an easier way! I think of you often Margaret and wish you well. Hugs. NancyHi Nancy, Sorry for the confusion – I lost my mom in 1999 due to emphysema.
It was my husband who passed in September from cc and he was not an alcoholic, though he liked beer and wine socially. Doug’s cc was found very late; already spread though his liver, lymph system and skeletal system. It was actually the bone mets that were his first systems (vertabrae actually fractured while biking). I do not know that there is a correlation between drinking and cc but they can’t be good for each other since they both attack the liver! I have learned the liver is an amazing organ and can operate well until 10% function, thus many late diagnosis. Hope this helps. NancyHA, HA but it’s not funny to be told you can’t use a bathroom!!! Get this. My GI gave me a whole sample kit of the Asacol and in it was a card that simply said, “This person has ulcerated colitis, please allow them to use your bathroom, it IS an emergency”. I now carry it with me although I probably will never use it!
He said normally people my age don’t get it and I may never have it again. One can only hope. My parents never had anything like this and lived to be 93 and 94.
I do have a Grandson with Crones, I worry about him but he just visited me from Milwaukee and I was so pleased to see how he takes care of himself at 22!
- The forum ‘General Discussion’ is closed to new topics and replies.