CancerCompass message board discussion started by Kelley on 1/10/2006 http://www.cancercompass.com/message-board/message/all,3990,0.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! My name is Kelley. My 39 year brother Mark was diagnosed with cholangiocarcinoma in Oct. 2005. As we have begun the search for answers we have realized that the most important thing is to get in touch with all of you. Hearing your stories, treatments etc. help all of us to know what direction to go. Doctors handle the treatment for cholangiocarcinoma differently in different parts of the country. That's another reason to stay in contact with others who are dealing with this. Our family, in connection with a few other families who are dealing with this, are working on a website specifically for cholangiocarcinoma. We feel this can be a help to all of us. I can't put the web address here, but if you would like it let me know. Good luck to all of you. We are in the battle for the lives of our loved ones. Kelley Kelley Tue, 10 Jan 2006 00:00:00 GMT Kelly - I would definitely like to know the website that you are setting up for cholangiocarcinoma. My husband Sam was diagnosed September 2004. We are being treated at UAB Comprehensive Cancer Center in Birmingham, AL and are headed into 17 months with this battle. Sam, like Mark, is a very remarkable individual - he is also a runner, very goal oriented and determined to give this disease a run for its money. I think the protocol for cholangiocarcinoma is similar regardless of where you are being treated. We were in the process of going to MD Anderson in Houston and were discouraged by our doctors because they said it would be so much easier to be close to home. Believe me, they were right. I do think it is important to receive treatment from a cancer center rather than a community hospital. I know of another person from Georgia being treated at UAB and she continues to do well and was diagnosed over three years ago. Sam is taking Gemzar and Oxaliplatin but I believe she takes Herceptin. I'm sure it has something to do with the makeup of the tumor because Herceptin is used for breast cancer. A writeup about her and cholangiocarcinoma was recently published in one of the B'ham magazines. I will be glad to pass it along to you if you would like a copy. This web site is a wonderful idea and will help draw attention to this disease and hopefully more money and research will be expended toward a cure. Sam's surgeon was a very close friend of Walter Peyton's who died from cholangiocarcinoma and he simply said that because of the disease being so rare, there just hasn't been enough money spent to find a cure. I personally think that if they ever find something to work on pancreatic cancer, it will work on cholangiocarcinoma. Both seem to be resistant to chemo and radiation. My best to you and Mark and his beautiful family. I'll be glad to pass along any info that I get that might be of some help. Betty59 Thu, 12 Jan 2006 00:00:00 GMT Hi Betty, Thanks so much for responding to my message. I'm always glad to hear of others who are doing well with this disease. I will try to put the info here. If for some reason it gets blocked, then look on the choosehope website under cholangiocarcinoma and you can get my email address there. Some of these sites will not let you put web addresses on them. I would love to know more about you and your husband and what he has been doing as far as treatment. Our goal is to gather as many of us as possble together on one site to share information etc. Here is the site address. Go ahead and give it to anyone else that you know is dealing with cholangiocarcinoma. We are still experimenting with it a bit, so keep in touch. The web address is www.cholangiocarcinoma.org. I will also put my email address here. When you get a minute will you email me information about your husband? (age, exact diagnosis, treatment, email address etc.) As we gather information I think it can help us all get a better picture of this disease and the other treatment possibilities out there. I would love to see the article about your friend. We do know that Herceptin is one drug that might be helpful to Mark because of the things that his tumors over and under express. Sign up on the website if you get a chance. Good luck and keep us informed. Here's my email address kelley.giles@gmail.com Thanks, Kelley Kelley Thu, 12 Jan 2006 00:00:00 GMT Betty, I hope you found it. (cholangiocarcinoma -dot- org) The more information out there the better. Right? Lricky Thu, 12 Jan 2006 00:00:00 GMT I found it!!! This web site is such a wonderful idea. Thanks to everyone for the hard work. I was really impressed with the research that the McCrea family has done on all of the chemos available and clinical trials. We did participate in the XL119 vs 5FU trial; tumors almost doubled in size but we do not know which chemo Sam received. Doctors took us off the trial and started Gemzar and Oxaliplatin. We are leaving for Birmingham in about an hour for another treatment. His next CAT is scheduled for January 26 at which time they will evaluate the success of these two chemos. Hope everyone has a good weekend!!! Betty59 Fri, 13 Jan 2006 00:00:00 GMT Hi Betty, I'm so glad you found the website. Please keep us posted on your husbands progress. Good luck in Birmingham. I hope things go well. If you are in contact with anyone else that has cholangiocarcinoma please let them know also. Keep in touch. Kelley Kelley Fri, 13 Jan 2006 00:00:00 GMT Hi Betty, Sorry I forgot to ask on my last post. Is it possible for you to put me in touch with your friend who is using Herceptin as one of her chemo drugs? We are very interested in talking to her because that is one of the chemo regimens that we would like to know more about. She is the only person we know of who is using Herceptin for cholangiocarcinoma. We would love to email her or visit with her. Thanks so much. I hope your trip to Birmingham went well. Kelley Kelley Mon, 16 Jan 2006 00:00:00 GMT I just found your message and I wonder how the Gemzar and Oxiplatin worked out for your husband. My wife is on the same Chemo (1month) with 3 more to go. Please let me know since your message was in Jan 06. Thanks. Stevon Stevon Tue, 25 Jul 2006 00:00:00 GMT Hello Stevon I am certainly sorry to hear about your wife. This disease is so horrible but affects people in so many different ways. Sam's problem has always been with the metastasis to the lungs and chest wall and not so much with the liver. After the RFA of the liver, his condition remained stable for 6 months without any chemo. He did not respond to the Gemzar and Oxaliplatin at all. The only shrinkage he had was with the Erbitux but it was temporary. They then added the Camptosar and it just about killed him. That is when he refused anymore treatments. I wish I could tell you what to do concerning the treatments but I know you have to try anything that might help. In our situation, hindsight would tell us not to take the chemo and enjoy what time we had left. His quality of life has certainly not been worth it for the last year and I don't know if it would have been better without the treatments or not. There is just nothing out there that has a strong track record against this disease. I personally think that when they find something to work on pancreatic cancer, it will work on CC. Hang in there and if there is anything at all I can do, please let me know. I hope I haven't discouraged you in anyway; I just know it didn't work for us but we are still praying for a miracle. Betty59 Tue, 25 Jul 2006 00:00:00 GMT Betty, Thanks for your response. Can you tell me Sam's was Intrahepatic Cholangiocarcinoma? (vs. extrahepatic) My wife's mestatasis has been in the liver and was found too late for surgery or radiation. Thanks for your frankness and I wish you the very best for Sam. . Stevon Stevon Fri, 28 Jul 2006 00:00:00 GMT Hello, my name is April M.  I live in Alabama about 1 1/2 hours away from birmingham.  How is your husband doing?  My mother has Cholangiocarcinoma.  She lives in Wichita Kansas and receives treatments in St Louis Mo.  She was told in Dec 2006 to go home on hospice and that she hd 4-5 months to live.  She has receved chemo and radiation this summer.  Now she is receiving Gemzar but I think that she only has may only a few more rounds.  I read in her office note from february last month that they offered her hospice.  But she is a trooper, she told them that she wanted a few more rounds of Gemzar.  Do you know of any new procedures that UAB is offering.  Thank you.  April M April M Tue, 11 Mar 2008 00:00:00 GMT  On 3/11/2008 April M wrote:Hello, my name is April Mastin.  I live in Alabama about 1 1/2 hours away from birmingham.  How is your husband doing?  My mother has Cholangiocarcinoma.  She lives in Wichita Kansas and receives treatments in St Louis Mo.  She was told in Dec 2006 to go home on hospice and that she hd 4-5 months to live.  She has receved chemo and radiation this summer.  Now she is receiving Gemzar but I think that she only has may only a few more rounds.  I read in her office note from february last month that they offered her hospice.  But she is a trooper, she told them that she wanted a few more rounds of Gemzar.  Do you know of any new procedures that UAB is offering.  Thank you.  April MastinIm sorry, I meant your brother  April M Tue, 11 Mar 2008 00:00:00 GMT Hello April - sounds like your Mother is really tough and giving CC a good fight.  I lost Sam on August 10, 2006 after a 23 month battle.  None of the chemos that they tried at UAB were successful and everything just kept growing - especially the lung mets.  Have you researched the cholangiocarcinoma.org site?  There are many success stories there and much information.  The site has a search feature that you can use that will give you a world of knowledge about this disease.  My best to you and your Mother and I hope that she continues to do well.Betty Betty59 Wed, 12 Mar 2008 00:00:00 GMT