Stage IV Bile Duct CA with mets to the Liver

Dear Scared Husband,

Gosh, I don't know what to say to make you feel better. They say that God only gives us what we can handle, but I don't believe it. You have every right to be angry. My only advice to you, its to take your energy and focus it on making your wife's life comfortable, peaceful and special. Unfortunately, we know that this cancer is viscious and unrelenting. We cannot change the reality of what is going on or what is happening to our families. All we can do is make our loved ones feel better, as hard as that may be.

I am going through the same thing with my dad, who is my best friend. I feel that whatever I can do to make him feel comfortable is the only gift I can give him right now.

Also, if family and friends are offering help, take it. You need to give yourself special treatment, too, even if it's a walk outside to relieve some stress.

I wish I could do more for you or give you more advice. Hang in there...

JenRose

I try to get things done for myself. But it is very hard when you are trying to make sure she is happy. The leader inme feels the ned to take over andcontrol the situation. But it just kicks your butt.
We do have family to help but sometimes its not enough.
We are so young to have this cancer. Just find myself asking how can this be.
Phil

Phil,

I'm sure you are doing the best you can do. It sounds like you are a wonderful husband and supporter for you wife. She is very lucky.

I don't know if you have thought of this, but what about something to help you? I have been on an anti-depressant for 18 months, when I had another family crisis and I'm glad to still be on it.

It doesn't take away ALL of the fear and anxiety, but it does help take the edge off. I don't know how you feel about that, but it might be something you can talk to your doctor about.

I can't say I know what you are going through. My situation is different. I am 38, my dad is 63. I have always been able to "fix" things and be in control. It's so hard to accept things like this. I do know what you are going through in that respect. It sounds like you and I have the same personality that way.

I've been having trouble with this site. It's very slow for me.

JenRose

I really try to be the best that I can for her. It kills me that she has this and cant be a mom. I really appreciate you giving me your email I will be in touch

Phil,
My husband is 40 and also has cholangiocarcinoma. He was diagnosed in Sept 2004 and had surgery in October. They didn't get it all so as of now he has a new tumor growing. He is on chemo and is miserable at times. We have children aged 10 and 13 so although they do have a chance to know their Dad it is still excruciating to think of them not having him as they get older. I think the advice about antidepressants is good. My husband has been on them since his diagnosis and I think it has helped tremendously. I haven't felt the need yet but sometimes the sadness really gets to me. Mostly, however, I just try to enjoy each day and moment that the kids and I have with him. I guess down deep I hope a miracle will occur but know that it is unlikely. I think the best we can do is try to prolong their lives as long as possible, whether it be months or years and make each moment as happy as possible. It is hard to take control of the situation (I'm like that too) but just think that every time you do research on treatments, make a healthy meal, let her sleep in, give her a massage or take a walk hand in hand you are giving her a chance to heal. You may want to look into alternative therapies (accupuncture, massage, meditation, etc.) My husband doesn't want to do a lot of it (he goes to accupunture and I do massage for him at home) but I know women especially feel they can benefit from time to relax and meditate, etc. It might be good for you to get a sitter and do some things together that you enjoy. I also try to remember to be thankful for the time we have had together and think how empty my life would have been if he had never been in it. I would rather have had the time we had and lose him than to never have had the time at all. We have also never been too angry about it - I mean why does anyone get cancer or die at war or in a Tsunami. Life really isn't fair sometimes but we just have to do the best we can.

I've been thinking about starting a website for cholangiocarcinoma so everyone can share info on the cancer in an easier setting. I would also have links to treatment centers, etc. Does anyone have any thoughts on it? I agree that this is a horrible disease and we need to make some progress. I didn't realize Walter Peyton had it too. It really helps to hear other stories. If you read through the other message boards on bile duct cancer you will see the one from the 29 year old whose husband died from it. We were told it's an older people disease but their seem to be many more young people out there that have had it than I thought. Good luck with everything and try to enjoy your time with your wife.

Hi there,
My advice is to all do a Google search for John's Hopkins Pancreatic Cancer Website.
They have bile duct cancer info, pancreatic info and a good message board. I think about 70 or 80 people are on it now.
As for me, I am 43 and my 53 year old husband has bile duct Cancer. Whipple 3-08-05. Clear margins, stage 3. Gemzar and monoclodal Tarceva for us and some radiation. So far, so good.
Some people on the John's Hopkins web site are long term survivors!!!
Blue Bird
P.S. M.D. Anderson in Houston has some Good success stories so keep the Faith!

Wow,
I never thought that peple would actually respond to what I had to write.
First obviously sorry that you have to go through this. It is horrible to deal with especially when you are young. So sorry for your children. As you read my post you see that I have a young son. I hurts me to think tht he will never know hs mom. Do get me wrong I wish for something such as a gift from god to come. But we all know the percents of this cancer. SO much like you I move with the day and hope for the best.
We have thought about acucpunture (sp)and reflexology. Does it help with pain and other health concerns?
Yeah Sweetness himself had the diease I think Michel Landon had it was well.
I would love to talk with the women whos husband was 29. I mean that is as close to the situation we have to deal with as anything I have seen.
Let no more about the the website you want to start. Again I hope things are well this up coming week and keep in touch. I have started to email with Jenn from this site.
Bye

I'm sorry you have to go through it too. The accupuncture has helped my husband with the pain. When he goes in they discuss any symptoms (sleeplessness, pain, rash, etc.)he has been having and she works on each of them. She also gives him herbs and other treatments that we can do at home. It really is a whole body treatment. We may be going to a Reiki healer soon too. I'll let you know how it goes. I don't know too much about reflexology. Good luck to you as well. It does help to talk to others about this disease.

Hi I took my wife to a Reiki treatment. My wife was so relaxed during and after. It was great to see her so peaceful. I will take her again soon.

Hi, I am sorry to hear about your husband. My prayers go out to you and your family. The website is a great idea. People need to know more about cholangiocarcinoma. My brother was diagnosed May 2004. He had a 10 hour surgery in July. He was doing great. He went thru radiation and chemo and 1 month later he developed fevers off and on. Which then they discovered abcessess on his liver in Feb.2005. He was very weak from it all. He needed blood transfusions twice. This is just a horrible disease that they can't seem to catch in time. He later became very weak and would not eat and could hardly drink.He couldn't even talk.But he could understand what we were all saying. The doctors didn't think he was going to live pass Mother's day. He was a strong man but watching him everyday just waste away was so difficult to see. We prayed for a miricle. The sad news was that he passed away on May 28th,2005. That was the worst day of my life. He was only 44 years old with two children,14 and 9 yrs old. There has to be something out there that can help others. I agree, I have done lots of research on this disease and read more older people get this. But lately I have read more younger, mostly males that get this. The books say that 1 in every 100,000 get cholangiocarcinoma. I will keep your family in my prayers.