Hi Michael,

Sorry to hear about your wife. How old is she? The people on this board are the nicest people I've ever chatted with. They will not only give you their support, but they seem to have a wealth of information.
My thoughts are with you and your wife,

Sandy

Thank you Lynda and Joyce,

   I do have a 29 year old daughter and 30 year old son, and they seem to be handling things ok,  (unless it's just a show for me). Sad to say my mom and I don't have a great relationship, I lost so much repsect for her after watching her with my dad when he died.  The night they told us he wouldn't make it through the night, she went home and went to bed. My Aunt went to her house to tell her my dad had died. I Can't imagine doing that with my husband. I never left his side. I didn't even have hospice. He was on a feeding tube and that is considered life saving measures! Can you imagine. Needless to say I brought him home with the help of my kids.  My daughter did try counseling and she didn't like it, so I called the funeral home that took care of my dad and husband and they offer free grief counseling, so I made an appt. for her.
Lynda, I never knew he signed a waver at GM until he was dying - I heard him tell the Dr.s. When I questioned him, he said it was like a book it was so long. I asked him why he never told me -  his answer- he didn't want me to worry!
I would like you both to know how much I appreciate your concern.  Thanks for just listening, it means so much. I pray for your loved ones also, and I wish you and them peace.  My heart goes out to anyone who has this disease or a loved on going through this disease.
PS:  Two of my three brothers have been great, so has my husbands brother. Thank you so much for asking.

Thanks everyone, I appreciate all of your input. My husband did work for General Motors  for 25 years, and they sign papers every year acknowledging that they work with chemicals and paint products. I did not know this until he got sick. Maybe it's just coincidence about his mom and him. I'm still worried about my kids.
I had to take my 18 year old daughter to the Dr. today because she is now under 98 pounds. She is taking her father's death so hard.  It's hard for me to help when I can't even help myself. - My father just recently died of stage IV melanoma. So things are drepressing around here. I was the only girl, I had all brothers. I guess I was a daddy's girl. Now my husband dies. I know that there are no answers, but I wish there were.
Again, thanks for your support.
Sandy

Dear Cincy,
   Life everyone else, I am shocked! There is a Mayo clinic in Arizona that is supposed to be very knowledgeble in this cancer. I would definitely get a second and third opinion. This is your baby, GO ANYWHERE if you can. There are a group of Dr.s at John Hopkins that specialized in this also. You might want to email them. I know they will respond, they did with me when I inquired about my husband.
Please know that you are in my family's thoughts and prayers.
Please, please, keep us informed. That poor little baby. I wish I understood all of this.
Sandy

Hi everyone,

   I ask this question for a reason.  As you all know my husband died from cc at age 52, April 8, 2007. (easter sunday) What I didn't tell everyone is that his mother died at the exact same age of the exact same cancer. All of my husband Dr.s came in to speak with us privately one day,  they  felt very strongly about my three kids going for genetic testing.  My kids went and they had every test imaginable and didn't see anything, but they want them to get tested every year.
What is extremely scary is that his brother went to get checked and they found two tumors.  Also his sisters and their children went, and one of his nieces had agrowth and a film covering her gallbladder. Needles to say the Dr. operated on both of them and removed their gallbladder. Now I'm really scared. Had anyone's DRs. mentioned this to them. I would appreciated any information any has.
Thank you to all of you, and my hearts are with you and your families.
Sandy

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(25 replies, posted in Introductions!)

Hi Lynda,
TPN is called Total Parental Nutrition. It is made specifically for that patient.  It contains just about everything in breast milk and then some. My husbands was made in Baltimore and shipped to New Castle, DE. It had everything he needed and then some, to get all the calories and nutrition he needed. It went into a vein into his chest. I hooked it up every night and it ran for 12 hours. I had to inject insulin into the bag, aciphex, and  two different types of vitamins. He gained 12 lbs those three months, but in the end the cancer was just too extensive. He initially lost 20 lbs. He was only 52 and my 18 year old daughter is having a very hard time. He died one month before her 18th birthday and 6 weeks before her high school graduation from ST. Elizabeths High. My other kids are 29 and 30, and they seem to be holding their own.
I will pray for a good outcome for your family. How old is your husband Lynda?
They told me my husband had four to nine months - he died in three.
You are in my heart and prayers.
Sandy

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(5 replies, posted in Introductions!)

Hi Val,
  Sorry about your husband. My husband also had cc, and like Marions, we were told this cancer is not considered curable, but there are ways to buy more time. Hopefully it will be good quality time.
  My husband was on a feeding tube for three months because of the nausea, even that didn't help.
  Please don't go crazy!  Hang in there!
Thinking of you,
Sandy

Dear Ginger,

  Please accept my sympathy on the loss of your Aunt.  This is a HORRIBLE disease, but it is a little known one, because it is so rare. I wish we could make people more aware of cc, but since it  only makes up 1% of all cancers, no one is interested in donating or funding for research.  I'm from Delaware, but I consulted with John Hopkins when my husband was diagnosed, and they told  me the same things the Dr.s here in DE had told me. Usually, once you have symptoms,  it's too late for a cure.
  I wish we could make our voices heard!

Sincerely,
Sandy

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(8 replies, posted in General Discussion)

Dear Rae,

My heart goes out to you and your family.  I wish your dad a peaceful ending with everyone he loves at his side. Give him whatever he wants when he wants it. That's what my kids and I did with my husband. One thing I can tell you is, the last three days went very fast! He got up easter morning and by 12noon he was gone.
I just want you to know that I am sending you my prayers. Love him as much as you can, be with him even more. Even if you just sit next to him, he'll know.
Please keep us informed.
Someone who cares,   Sandy

Marley,

   Boy does that sound familiar! My husband thought he had the flu. Within one week, he had turned yellow and quit eating. In the second week he was on TPN,  had two cholangiograms and a stent put in his bile duct. We were shocked. Where had this come from? He died ten weeks later. My kids and I were just devastated and numb!
I wish someone could explain it to me.
I will keep you in my prayers, and I'm so sorry to hear about your Aunt.
Sandy

Hi Lisa,
  So sorry to hear about your dad. If it is CC I hope he doesn't suffer, it is such a painful cancer. My husband was 52 when he was diagnosed. His lived for three months. I will keep your family in my thoughts and pray for the best. 
Sandy

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(25 replies, posted in Introductions!)

so sorry to hear about your husband. When my husband was battling cc, he had to be on a TPN bag every night. He didn't eat for three months, because he vomited everything he took in.  I even injected  medications into the bag each night and it still didn't help.  This is such a vicious cancer and I am so sorry you are going through this.  You are in my thoughts and prayers.
Sandy

I think donating in memory of a loved one is a wonderful idea. When my husband died of cc, we had donations sent to John Hopkins biliary research center. I wish I had known about this site before, but I guess no matter where you donate, it still helps people with cc.

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(4 replies, posted in General Discussion)

Dear Charlene,
My heart goes out to you. My husbands Dr. told us the chemo would be devastating and not much help.  The only thing I kept hearing from all of his Dr.s was how rare this cancer is, and difficult to diagnose.  I'm from Delaware, but I consulted John Hopkins and was told the same thing. I had nine different Drs. on his case, and we had hope to the very end, but this is such a vicious cancer that nothing worked. 
I will keep you and John is my thoughts, because I know the pain you are going through. If there is any advice I could give you - it would be to love him as much as you can, be with him as much as you can, and keep him as comfortable as you can because CC is a painful cancer.
You are in my thoughts and prayers.
Sandy

Thank you so much! I feel like I found a new friend. Cholangiocarcinoma is so rare, I don't know anyone other than my husband, who has died from it. My heart also goes out to each and every one of you who has lost someone you love from this vicious cancer.
Sandy

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(11 replies, posted in General Discussion)

Hi Charlene,
I'm new here. My husband died on April 8, 2007, Easter Sunday, and I never left his side during his entire illness.  You will have other chances to see your grandchild, don't leave your husband alone. I told my daughter I couldn't watch my grandson at all when my husband was ill. She will understand. In the end you will make the right choice for you and your husband.
You are in my thoughts and prayers.'
Sandy

I just found this site and I am so thankful I did. My husband was only 52 when he died on April 8, 2007 - Easter Sunday. We were married for 33 years.
He was diagnosed on January 4, 2007. He only lived three months. Those three months were like living hell on earth.
He had a double lumin in his arm to be fed, he had a metal stent in his bile duct, he had two tubes draining from each side of the liver. In those three months he had every test available, and we were told he was a candidate for the whipple surgery. They said it had not spread. The surgery was to be 8 hours long. After an hour they came out and said it had gotten to his hepatic vein and aorta. Needless to say,  my kids and I were devastated. He died five weeks later. Shortly before he died he was hospitalized because he couldn't breath. The cancer had gotten into his chest lymph nodes and were pressing on his lungs. I brought him home to die, that's what he wanted.
I am so lost, I don't know what to do or where to turn. This man was my best friend for 34 years, and I am so overwhelmed with grief.
Hopefully reading some of these messages will help me through and help me cope.
Every story on this board is so devastating, and my heart goes out to each and everyone of you who has lost someone to this vicious cancer. We aren't alone, although it feels that way sometimes.
I would love to hear anyone's story, if only to vent or talk.
Thank you for listening to my story.
Sandy Blake