CancerCompass message board discussion started by Pegnys on 1/19/2006 http://www.cancercompass.com/message-board/message/all,4136,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband has been fighting this disease since August. He went into surgery to remove the problems and came out with his gald bladder removed and a confirmed diagnosis of bile duct cancer, stage 4, with 6 months to 1 year to live. He has since had 2 chemo-infusions which has shrunk the tumor some, stopped the progression from overtaking the stent, and lower tumor numbers. All good you say, yes, but sicker by the day and much weaker. We seem to have the very best doctors, but are still trying to find someone, anyone who has lived with this thing for more than 1 year. I do not want to see him suffer anymore than he has to and I certainly do not want him to feel he has to live for me at all costs. My husband is 66 years old and I am 57 and he worries about me the most. If this treatment can give him more years of life with some quality attached to it, fine, but otherwise I want him to feel he can go with God. Anyone that has any answers for me, please let me know. Peggy N. Pegnys Thu, 19 Jan 2006 00:00:00 GMT Hello Nancy, My husband was diagnosed with bile duct cancer in May. He has had chemo-embolization in July which led to blood clots in both lungs, infection after infection, fevers of 105.4, hospitalized 6 times and I could go on and on. At the present, he has enrolled in Hospice and is able to get out for a while on a good day (sometimes 2-3 times a week). He sleeps approximately 12-14 hrs a day. He takes an RX powder that he mixes with water to rid of the bile salts; this keeps the jaundice from being noticed so much, and his itching has subsided almost by 95%. His pain level is under control with medication. My husband such as yours worries about me too. He is 64 and I'm 60. We both thought our retirement years would be different, but God had another plan. We were told chemo was not an option because the tumor has metastesised to both lobes of his liver. It's easy for someone to tell you, be strong for him when sometimes you're falling apart. Keep telling him you love him and keep him as comfortable as you can. Enjoy the good days and pray the not so good days go by fast. My thoughts are with both of you. If you or anyone else knows of a foundation that takes donations just for cholangiocarcinoma, I would appreciate the information for all of us. Misundrstd7 Sun, 22 Jan 2006 00:00:00 GMT Thank you for your reply. There doesn't appear to be many of us out there. Sounds like you have been thru hell. My husband was not a candidate for chemo either. The chemo-infusion is a process where they go directly into the tumor and shoot the chemo straight into the tumor. He is having 1-2 days a week that is half way decent and the rest are pain filled. I sure wish they could get the pain controlled. I do not know how long it will be until we contact hospice. I don't think Earl is at that point as yet and I think I will know when the time comes. He really is dwindling down to nothing. Good luck to you both and my prayers will include you. Peggy Nystrom Pegnys Thu, 26 Jan 2006 00:00:00 GMT Could you give me the name of the medication that eased your husband's jaundice and itching? my father-in-law is dealing with this also and is miserable. Laurie8707 Mon, 27 Mar 2006 00:00:00 GMT I don't know if any of you who have posted will receive this message or not because it's been such a long time since anyone posted. My husband was diagnosed in May, 2005 with gall bladder cancer, bile duct cancer. He was given 1-3 years to live. He died 5 months later. This is a most devastating cancer because you are totally helpless. There is NO proven cure, just a chance of prolonging life. Fortunately, my husbands quality of live was pretty good until the last two-three weeks. He did suffer the jaundice, itching, ...all those things that made him uncomfortable and there really wasn't much to do for that. Some relief but not much. Although we were in a cancer treatment center, we tried to be as holostic as possible. I believe that was the reason that he had the QUALITY! My advice to all of you would be to love hard, talk much and pray together. There will be a definite transition time for the spouse left and these talks, prayers, etc that you had together will help to sustain you. I'm 56 and my husband had just turned 60 when he died. I thank God that we had the last 3 months of his life to recount the 27 years we had spent together, to assure each other of our undying love and to help our children understand that Daddy was going to a better place. My husband took comfort in knowing that he had spoken to diffent friends of his to help do things for me after he was gone and felt assured that they would do it. It gave him comfort to be able to tell our son in law to "take care of her. She isn't going to handle it well". He knew that he was leaving and he didn't want to. But he served and trusted God to know what was best for both of us. He didn't want to leave me but he knew that he was leaving me in "bigger hands" than his. It hurts. It's the most devastating thing that I've ever had to encounter but life really is as a vapor and we should all live it to the best of our ability with Gods help and know that life doesn't stop when our loved one stops breathing. It's only just begun in another realm. And we will see them again!. Bless all of you who are fighting this damnable disease! Amily Thu, 22 Jun 2006 00:00:00 GMT