You are not logged in. Please login or register.
La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Due to recent news about new cancer treatments, CCF is gathering information about your experience with genetic testing of your tumor. Whether you have or have not
had any genetic testing it is important to answer the questions to help us make progress in cancer research.
Take the Survey
Posts found: 10
Thank you Lainey and
Marion for your kind words. Our transplant team has said that it would be about 3 weeks and a gentler way to go. Hoping for kidney failure actually. I will let you know as it may help someone else. Also wanted to tell you that Dr. Javle at MDA is our oncologist and I am so glad that his research is supported by the foundation. He is wonderful and because of him we have had 5 more years and the blessings of two grandchildren.
This is strange but we are stopping anti rejection meds . Cholangio is back and we are at peace with very immeninent death. Choosing to not ride out the spread of the cancer. Anyone have any thoughts.? Not to continue the fight, please, but timing or experience. Our doctors are supportive and have answered questions but wondering if others have chosen the same path.
This is strange but we are stopping anti rejection meds . Chola bio is back and are at peace with very immeninent death. Choosing to not ride out the spread of the cancer. Anyone have any thoughts. Not to continue the fight, please, but timing or experience. Our doctors are supportive and have answered questions but wondering if others have chosen the same path and some thoughts?
My husbands tumor has returned, even with liver transplant. Found this because of feeling full, then diagnosed with gastroparesis. He' s now having chemo again and has a JPEG so his stomach can drIain and fed through the J tube. Please google gastroparesis as there is loads of info and suggestions on what foods he can tolerate easier than others. I would ask your Dr's if the Xelods can be crushed. he also took Xelods after transplant and got the horrible hand and foot peeling.. .did find help with diatomaceous earth as a paste. Only thing that relieved the discomfort. Hope this is helpful
I do agree that you should insist they track down infection! I don't want to scare you as most people deal with gastroparesis without ever needing a tube.
Hi, I haven't checked in awhile but would like to tell you that my husband is 15 months out from liver transplant and doing great! Cancer free and healthy.
Cisplatin very difficult with no immune systeem and while the xeloda was rough thankfully we found Mississippi Miracle mud which relieved pain immediately unlike anything else we tried. We are forever grateful to Dr. Javle at MD Anderson and Dr. Ghobrial and Dr. Gordon-Burroughs at Methodist in Houston. Hang in there!
Hello, it's been awhile since I have been checking in but my husband has been doing do well that it was as if I could take a break! He was diagnosed a year ago, did the gem/cap chemotherapy here at home, then to Houston for radiation. He was recommended for liver transplant as his tumor is non resectable. So we now have two hospitals, MDA and Methodist. We have been back home for the past month and he haslots of energy, looks wonderful and we feel almost normal! He is on his third round of Xeloda, 2 wks on,one week off while we wait for a liver. Starting to see some evidence of hand- foot side effects. I have found some info on B6 being helpful. Does anyone have any experience with this?
I really feel that we have beat the odds here so far and hope this is encouraging to others. When he was first told the news, he was given 3 to 9 months with no hope to ever qualify for transplant. Now look how things have changed! We read the Anti Cancer Book by Servan Schreiber and that was so helpful as it gave us focus. Another thing that I think made a huge difference in his tolerance of the chemotherapy and radiation and his energy level was a whey protein isolate, Immunocal. If anyone is interested, google it, there is a lot of info available. Thank you all for sharing and allowing me a place to go with this.
My husband and I feel so much better after talking to two people that went also went through Methodist for transplant. Bonnie, thank you for sharing your story.
You and your husband are in my prayers. We met with another gentleman who Went through the process there and is cancer free after his transplant 16 months ago. He is doing very,very well and could answer so many questions. After talking to them and reading so many posts and seeing frustration felt by others, it reinforces that I am my husbands advocate and it's up to me to stay on top of everything, even if they are the "specialists"! It is rumored that there are some other CC folks that are being considered for transplant at Methodist in Houston and I would welcome hearing from them.
He totally changed the way we felt about cc entering our lives. Truly a wonderful and giving man to make such a huge difference to so many.
Thank you for your welcome. Pam, I am so sorry about your dad. Was he seeing Dr. McKee in OS? He is who diagnosed my husband.
Good Morning, this site has been a wonderful source for me and I thank you all. My husband was diagnosed in November of 2010 and is being treated at MD Anderson by Dr. Javle. As his CC is quite advanced and not resectable, his treatment has consisted of numerous stents and he has finished up 13 rounds of gemzar/cisplatin. He is doing amazingly well. I am a huge fan of Dr. Servan-Schreibers book, Anti Cancer A New Way of Life. We eat well and believe in integrative medicine. Javle has recommended him to Methodist Hospital here in Houston for a Liver Transplant. We are seeing Dr. Butler for radiation and in the process of meeting with the transplant team for further testing. They feel he is an excellent candidate. All of this had been set up for August and I stopped it until we had more questions answered. Hate to say it but I am not very happy with Methodist. Horrible communication does not instill much confidence. I did read one person's post who also had issues with Methodist and that is what prompted me to join. We are blessed in that our grown children both live close to the medical district here in Houston. My husband can live here quite comfortably as he has 5 wks worth of radiation (along with Xeloda). We live on the Miss. Gulf Coast and I can travel for appointments. Have thought about St. Louis after hearing Kathy's story and also Mayo in Rochester but Houston does work taking travel, work, kids, dogs all into the picture. Thank you for being here and sharing information. This is quite the journey and knowing that there are so many folks out there that are as brave as my husband is comforting.
Posts found: 10