CancerCompass message board discussion started by Bren_c on 12/9/2005 http://www.cancercompass.com/message-board/message/all,3698,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all I am new to this board. My Mam was diagnosed with bile duct cancer 8 weeks ago. She has pains etc since March. They have given us two options, major surgery which will include taking away half the liver or Chemo which will not cure her but prolong the disease. the choice is left up to mam to decide... I suppose over the weekend we will all have to talk about this etc. Doctors say its high risk surgery etc.. has anyone been in this situation? Bren_c Fri, 09 Dec 2005 00:00:00 GMT Hi Brenda; Yes, my father has a Klatskin tumor, and it was in-operable. The only option for this type of cancer is removal. Chemo is not an option. My advice is have it removed while you still have time. Carmine Fri, 09 Dec 2005 00:00:00 GMT Hi Brenda, i was in the same sitation as you. my mom was diagnosed with cholangiocarcinoma in Nov 2005( a few weeks ago. she went in for surgery to remove 40% of her tumor. surgery is the best option by far i think. in my mom's case the tumor had spread so her surgeon wasn't able to remove it. its a tough decision but at least with surgery there is a possiblity that the tumor can be removed completey. avoiding chemo, medications etc. I think its a chance you have to take.bile duct cancer is a scary one. but there is hope. research as much as you can. i ordered a highly fermented soybean beverage for my mom, called Haelen951. its very expensive. $60 per bottle, you have to drink 1 per day. there is one person that survived cholangiocarcinoma and he did this by getting on a healthy diet and taking this beverage daily. i'm trying whatever i can.we have gone for second opinions and i've been on the computer everyday researching and speaking with other patients and families dealing with this.Good luck!! and Pray alot. as i will pray for your mom and your family. God Bless You!! if you need to talk with me, you can email me at paulinari at lycos dot com, (i have to spell it out or it will be deleted from the message board). good luck!! paulina Polina Wed, 14 Dec 2005 00:00:00 GMT Hi Breanda, My husband was diagnosed with Bile Duct Cancer in November of 2005 at age 67. The cancer had not spread it was localized and in that he was lucky. The ONLY option for this type of cancer is surgery. Chemo or Radio is at best dubius. We discovered it through test that were done as a result of checking into the emergency room for Jaundice which we thought might be a Heppatitis. We met with the top surgeon in this field for bile duct reconstruction at Memorial Sloan Kettering in NYC and scheduled surgery immediately with high hopes for his recovery as he was a healthy and strong man otherwise and all the pre-surgery tests came back confirming this particularly with regard to his heart and lungs which are key to undergo this major surgery which, as you probably know, involves the removal of more than half of the liver, total removal of the gallbladder, and reconstruction of the bile duct by using a portion of the small intestine. The operation lasted 6 hours and my husband came through it with flying colors. The first days after surgery are critical as some of the risks of this surgery are the development of infection or blood clots after surgery. He was doing very well the first couple of days however on the fourth day he died of what the surgeon now feels was a major pulmonary embolus (blood clot which traveled to the lungs). It was all so quick, and of course, I was with him when it happened during the night. However, we both knew that the surgery was the only chance. Without it he would have died within a few months, perhaps not even that long, and it would have been with a lot of pain. I still have a lot of questions and can't understand why the hospital, which is one of the best in the world, did not understand that the pain and discomfort he was feeling the entire day which resulted in the embolism did not understand the symptoms and intervene. I don't know. But if your mom is a candidate for the surgery know that it is the only hope for this type of cancer. I am sorry you and she have to go through this it is awful and I do wish you all the best. Cristina Cristina Sun, 08 Jan 2006 00:00:00 GMT Cristina. So sorry to hear about your husband. I got a fright reading your response. It started off so positive I am sitting here crying because i am so upset for you. I havent a clue how you are feeling and I am thinking of you at this hard time. I dont know what to say only that my thoughts are with you. Bren_c Mon, 09 Jan 2006 00:00:00 GMT Brenda, I'm sorry I didnt' mean to upset you with my response and certainly didn't mean to make you cry - I've already done plenty of that and I think will continue for a while. Buy whatever time you can with your mom and enjoy every day with her. With my husband everything happened much too quickly and we didn't have time to say goodbye to each other. I really do wish you all the best. Cristina Cristina Mon, 09 Jan 2006 00:00:00 GMT I am upset for you and I cried for you, My heart goes out to you. Thanks for sharing your story with you. God bless xxx Bren_c Tue, 10 Jan 2006 00:00:00 GMT Paulina, My Dad was diagnosed w/ cholangiocarcinoma in December w/ mets to the liver and possibly lung. Although we are trying to remain positive, as you well know, the prognosis is grim. I have read about Haelan, but I am skeptical. Have you noticed any differences with your mother? Any guidance on this would be so helpful. My family and I are desperate! Thank you and good luck with your mother! Andrea Hopeful5 Fri, 13 Jan 2006 00:00:00 GMT hi hopeful5, im sorry it took so long to reply to your message. i moved back in with my mom and she doesn't have a computer at her house. as for your question, my mom takes the haelen beverage everynight (she skipped a week though). she has had 3 chemo treatments ( 1 hour once a week). we were told that she would be nauseas, weak,tired,sick, so far she hasn't had any of those symtoms.she is full of energy and happy all the time. im not sure if it is the haelen or what but i will keep purchasing cases of it for as long as i need to. she will probably remain on chemo for another few months. she is also part of a clinical trial where is is taking lapatimine (6 pills a day). im praing that she stays in good spirits and good health. i believe in miracles and prayer. i will be praying for you and your family. God bless you, you can email me anytime if you need more info or if you just need someone to talk to. paulina Polina Mon, 16 Jan 2006 00:00:00 GMT Paulina, I am so glad that your mother is doing well with chemo. Has she always been feeling this well or has it been a quick turnaround? Unfortunately, my Dad has been hospitalized due to a blood clot in his leg (possibly from recent radiofrequency ablation treatment) and he is not improving. His kidneys are not working well and they are trying to figure out what is going on. It is so frustrating because it seems that they are moving too slow. Last week he was up and moving around and now he is bedridden and very out of it. They may admit him to ICU, depending on what the latest test results show... I am still hopeful that he will get through this...I just hope they figure it out soon. I want him to start improving and get home. I really would love to hear about your experience with Haelan, so please keep me updated. By the way, who did you order it from and what is the cost? Also, who are you going through for the lapatimine clinical trial? Does your mom have the cancer anywhere else and how large is the tumor in her liver? Thank you for your help and God bless you and your mother! FYI - my email is andrea (dot) maki at knology (dot) net. Andrea Hopeful5 Wed, 18 Jan 2006 00:00:00 GMT