CancerCompass message board discussion started by Dawn O. on 12/8/2002 http://www.cancercompass.com/message-board/message/all,486,0.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 74 year old aunt was diagnosed with this cancer this past September. Surgery is not an option and her doctors do not feel that she should put herself through any treatment. She has been given 3 to 6 months to live. I am her caregiver along with her husband. I would like to hear from anyone who is familiar with this cancer. I really need some emotional support. My aunt is like a mother to me and I am really struggling with her diagnosis. She had an ileostomy done over 30 years ago and they feel this is why she was prone to this cancer. Other than that surgery, she has been healthy. This came on suddenly and the doctors thought that she had gallstones. By the time they finished all the testing she was already a stage IV. Please give me some advice. Sincerely, Dawn Dawn O. Sun, 08 Dec 2002 00:00:00 GMT Hello Dawn, I totally understand how you feel and what you are going through. My mother who just turned 70 was just diagnosed with this type of cancer. So far we don't know a lot other than it is advanced and the doctors feel she will be go in less than a year. We are looking at many and ANY options. I don't plan to loose my mom if I can help it. One of the things we are looking at is a Dr. in Reno who has had a lot of positive success treating cancer. He treated the wife of someone in my office and between that and prayer, she is still alive 12 years later. If you can do me a favor, as you run across information about this condition that you think I may find useful, please let me know. Thank you and I'll say a prayer for your Aunt. Take care. Steve Thu, 27 May 2004 00:00:00 GMT My husband also had the same cancer as your aunt. He passed away on January 31st of this year. He did have a successful surgery to help him live for eight months. Unfortunately the survivors are none from Cholangiocarcinoma. It is not possible to reverse in stage IV or even stage II. I ultimately hope you will find peace and transformation from this experience. I am only 29 years old and a widow. If I can get through this and past this, you can too! I wish you much peace and wisdom and hope for a long life for your aunt. Lyra Lyra F. Wed, 16 Jun 2004 00:00:00 GMT I just read your posting. I am sorry for your loss. I am glad you have found peace. I am looking for answers on end stage and what to expect. My mother was diagnosed with cholangiocarcinoma about 5 years ago. She had the whipple procedure done. Very breif history: my sister and I are her only family and we do not live locally to her, and she is VERY private. She was doing well for a while, but this past Thanksgiving, seems as though she has been getting progressivley worse. She has had 2 pathological hip breaks, she can no longer speak, refuses to eat, has had episodes of vomiting bile, needs O2 and sleeps quite a bit, has short term memory loss and has lost some cognitive skills (most of this info is from a family friend who is also a social worker). It has been confirmed that her cancer is back and she is in the end stages. We were able to get a visit about a week ago, I'm not confident that she even remembers we were there. Doc of course, can't release info to our friend. With us living out of town, it is hard. How long will my mom go through this "end stage"? On our visit, we had to change mothers status to DNR, because she put down she wanted full-code, but not to be intubated or xfrd to hospital. I am strong in my faith and I am conident we did the right thing by changing her status. We looked at what her quality of life would have been if she were resicitated, I can't picture her getting worse and staying that way for prolong period of time. Trinismommy Fri, 25 Feb 2005 00:00:00 GMT It is really wonderful to get your message because it is still very touching to see and remember the bravery and strength that we as caregivers and caretakers to our sick families put forth. You are doing a wonderful job and it sounds like you are making very sound and logical decisions for your mothers care. Although my experience was quite a bit different than yours, my husband did not encounter much of what you spoke about in your letter towards the end of his life. The end stage is different for everyone. In our case he was up and walking on Friday and died two days later on Sunday. Some signs were increased fatigue, he went to sleep for two days and never woke up. He was also vomiting blood and the doctors let us know his kidneys were beginning to shut down. Your mother sounds like she has had many, many very difficult episodes related to and separate from the cancer. She will have such a tremendous peace when she leaves. It is very obvious if and when you see her die, how amazingly calm and natural it looks. Very disheartening, but also very graceful and calm. It sounds like you have made very heartfelt decisions for her care. They say the end is the hardest, but truly that is only for the survivors not the person leaving. Take care and many blessing to you and your family. Much love, Lyra J. F. Lyra F. Fri, 25 Feb 2005 00:00:00 GMT My wife and I were told she had issue with her gallbladder. Just before the birth of our son 2-05 (born early 3-5-05) we did a procedure which told was she had a tumor in the bile duct. Cholangiocarcinoma no clue what is was. So We had him and we discovered that surgery was out. So we began Chemo. SHe is still strong and postive. Lost body weight but we are eating as much as we can. What are so things as her caregiver and new father must be aware of. Witniss1st Wed, 13 Apr 2005 00:00:00 GMT I just found this site today. My Dad who turned 78 on April 8 was diagnosed with cholangiocarcinoma diffuse on Mar 17,05. His surgery was 3-22-05. He was schedueled for the Whipple but after 5 hrs into surgery the surgeon realized it was diffuse. He is home now. He is getting weaker and weaker. He is having severe diarrhea that started last night. He is unable to eat and/or drink. He is refusing medical intervention such as IV fluids to hydrate him. Is this end stage? The surgeon mntioned chemo and radiation after he recovers from surgery. He is 4 weeks post op. Do we push for medical intervention? Does this sound like end stage? Do we just opt for comfort measures? I am praying without ceasing. What do you think? Kate4 Thu, 21 Apr 2005 00:00:00 GMT Hello, My dad was diagnosed in October of 2005. We went to Northwestern Memorial in Chicago. The tumors had spread into his liver, one of his ribs and one of his vertabrae. They began him on gemcitobine and xoloda in November. He handled them both very well. We found out in January that the cancer was growing. He went up to Mayo Clinic in February and they didn't have anything different to give him for treatment. They were concerned about the tumor in his vertabrae, more than his liver. In February, the began him on doxil. It made him sick and he had lots of pain in his back. On March 24th, he woke up and couldn't move his legs. The tumor has grown out and wrapped around his spinal cord. He is now paralyzed from the waist down. He is in a rehab center downtown Chicago. Hopefully, he will be home and using a wheelchair before May 15th. As you all know, it is a horrible cancer. It is hard to find any good news out there. I know that Walter Payton had this same kind of cancer, so I am thinking of doing some fundraising for the Walter Payton Cancer Fund. Unfortunately, you cannot specify the funding go to Bile Duct Cancer, but I feel I need to do something to help. I am praying hard for a miracle. My dad is one of my best friends. He is 63. Praying for everyone, JenRose Jenrose Wed, 27 Apr 2005 00:00:00 GMT I am 33 and a new father that is going through the same situation you did. My wife is 34 and in good spirts. It is very hard for me to deal with all of this. I cant believe what is going on in our life. The worst part is the fact that there is nobody who is going through this situation at our age. Very scary. She is still able to function, talk, eat, walk. Some complications with infections but we can get by that. Just a loving husband and father who is very angry. Witniss1st Thu, 28 Apr 2005 00:00:00 GMT I know this message is old........but how did you deal with everyday. I am 33 and a new father. My wife is 34 and in a bad situation. Cancer has spread. I'm not sure what to think, expect, or handle. Any thoughts that would help me? Witniss1st Thu, 28 Apr 2005 00:00:00 GMT 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 Jenrose Thu, 28 Apr 2005 00:00:00 GMT 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 Witniss1st Thu, 28 Apr 2005 00:00:00 GMT 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 Jenrose Thu, 28 Apr 2005 00:00:00 GMT 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 Witniss1st Thu, 28 Apr 2005 00:00:00 GMT 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. Susan i Sun, 01 May 2005 00:00:00 GMT 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! Blue Bird Sun, 01 May 2005 00:00:00 GMT 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 Witniss1st Sun, 01 May 2005 00:00:00 GMT 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. Susan i Mon, 02 May 2005 00:00:00 GMT 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. Witniss1st Sun, 08 May 2005 00:00:00 GMT 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. Demps Fri, 17 Jun 2005 00:00:00 GMT I am so sorry to hear about your brother. I can only imagine how difficult the last month has been for you and your family. My husband is doing pretty well right now and we just got a good CT scan. His tumor shrunk somewhat and there was no new growth so we are really hopeful that the treatments will continue to work. With all of the sad stories out there, though, it's hard not to think about the worst too. Our prayers are with you and your family. Susan i Fri, 24 Jun 2005 00:00:00 GMT My wife has been diagnosed with stage IV gallbladder cancer. It started with a tumor on her ovary. Surgery was on 4/27/2005. She is on 5FU and Leucovoran with a CT scheduled for 7/27. I have come to a place where I live one day at a time. So far it is easy because she is still healthy. I will keep you all in my prayers. Rick Wamba138 Fri, 08 Jul 2005 00:00:00 GMT My prayers are with you and your wife. My Dad was diagnosed 3-22-05 with cholangiocarcinoma. We recently were told he now has mets to the liver. He is receiving Gemcitabine and Carboplatin. His white count has dropped dramatically. He is not eating and losing weight. He is still driving and functioning independantly. I am inquiring about intrahepatic chemotherapy. God bless you and your family.This is an awful disease. I am a nurse and did not know of this. I hear it is quite rare. Kate4 Wed, 03 Aug 2005 00:00:00 GMT hi suzie, i just read your message and was wondering what information you have recieved so far about cholangiocarcinoma. my mom was diagnosed with it a few weeks ago. unfortunatley its in its last stage...stage 4. i know there are clinical trials for this. can you please send me whatever info you have. God Bless You and your family, good luck!! i will be praying for you. Paulina Polina Sun, 27 Nov 2005 00:00:00 GMT Hello Susan, My father had a good CT scan too. His tumor has shrunk too, with no new growth. However, he is very weak and sick all of the time. He seems to be getting lots of infections. He's not eating or sleeping well at all. My mother is exhausted and not sure what's making him so ill, the cancer, or the chemo. Or both? Has your husband experienced any of these other symptoms? How long has he had the cancer? Has his cancer spread to the liver too? Sunshinemommy Thu, 19 Jan 2006 00:00:00 GMT This is my first posting and I would really like to know of anyone out there that has lived longer than one year with this specific type of cancer. My husband is having chemo-infusions, which is a very rare procedure. His doctor is Christian DeWald and we are in Phoenix, AZ. This doctor is close to our home, but appears to be one of the only doctors in the country doing this. My husband's tumor has responded to this procedure and appears somewhat smaller and the liver has not gotten any worse. His tumor numbers are also down, but he does appear to still be getting weaker and sicker by the day. He currently has an infection and they are delaying the next chemo-infusion. I have done a great deal of research on this and his treatment appears to be working in some, so anyone out there that is still alive and kicking please let me know. As you know, it is hard to keep their hopes up. Peggy Pegnys Thu, 19 Jan 2006 00:00:00 GMT My dad has just been diagnosed with this cancer. The only way we knew he was sick is his skin turned yellow. The day before we went to the dr. he had been unloading concrete. It is two weeks later and he can barely walk. If what I have read is right I believe he is in stage 1b. The tumor has blocked both sides of the bile duct but has not spread outside the duct. Any info is appreciated. He is 66 years old and a very strong man. Jayscott Sun, 09 Jul 2006 00:00:00 GMT