jathy1125
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Hello, and like everyone so sorry you had to find this wonderful group of people. Also like everyone else says, you need a second opinion. I am one of the few survivors of cc. I also had an inoperable tumor in my bile duct. I was very lucky that by a miracle I had my first ERCP (stents) done by a knowledgeable doctor. I was placed in Dr. William Chapmans care with in 24 hours of diagnosis. He is a world renown doctor at Barnes-Jewish Hospital at St. Loius, MO. I qualified for a clinical trial (Mayo and Barnes the leaders in this trial) which involved chemo, radiation and a liver transplant. I ended up having 2 transplants. I am alive today because of them. You can read my story at thetelegraph.com just type in christmas miracle. Don’t give up and get opinions until you know you have right one. Thanks to Dr. Chapman I got to skip that step! Good luck and lots of prayers- Cathy
Please don’t forget Barnes-Jewish Hospital in St. Louis MO. They just openned a new cutting edge transplant floor. One of the main reasons is they are considerd a “cholangiocarcinoma center”. They did both of my transplants and I will always be there number one fan. How do you ever say thank-you to someone who saved your life twice, I do by passing along my miracles because of them. Cathy
Codergirl, all my prayers and love are with you. Your mother was so blessed to have left her legacy in you her, amazing daughter. Cathy
Wow unbelievable and congratulations. I was the front page “christmas miracle story”. My story was published December 25,2010 at http://www.thetelegraph.com. My story was also the editor’s (Dan Brannon)topic on December26,2010. I hope if you go to that site you can pull up past stories. Once again God thru in and interesting twist, in the article it talked about what a great man Dr. Chapman is and on christmas eve I received a letter from him telling me, what an inspiration me and my family were to him, unbelievable all that I did was be sick! Cannot believe I received his letter the day before my story was published. CC has made us an amazing family and will keep praying for us all. Cathy
Hello-I was diagnosed on July 31,2008. I learned from this site how lucky I am. I skipped all the “oh my gosh” and went straight to this is what you need and this is what we are going to do. I am thankful everyday my local doctor was on vacation because my ERCP would have been done with a local GE and I would have had a whole different outcome. Believe in miracles and prayers-sending lots your way- Cathy
Peony- I am a cc survivor. I was having a great summer in July 2008. July 30,2008 was last my “normal day”. July 31, 2008 I was told 6-8 months to live. How do you move on from that, you don’t at first. I found this site a month or so after being diagnosed and instead of embracing it and finding cammedrie, I wanted no part of it. I guess at the time it was a major case of denial and reality. I now know I should have utilized it more but I was to busy surving. I am on it a lot now because I want to give hope. Kim is right we do have possibilities, I am a live due two liver transplants. Contact Kims doctor, the Mayo-Clinic or Barnes-Jewish (St. Louis, Mo). If my doctor had not been on vacation, he would have sent me to a local gastronologist who wouldn’t know what he was looking at. He would have taken a wait and see approach I wouldn’t be writing now. Start at the top, and get the best info out there. Keep lots of hope and prayers-Cathy
Shari-yea! I always did good during chemo it was usually 2-3 days later that it hit me. I would get tired but not non-functional, just a good nap for about 10 hours. Make sure you keep distance from big crowds and “‘purell”, your immune system is compromised. Enjoy the holidays and don’t get to clutter free! Cathy
Janet-another cure for hiccups is bitters on lime wedge!! Just douse lime and then suck on it real quick, works great. Learned this from years of bartending-always works Cathy
Janet-another cure for hiccups is bitters on lime wedge!! Just douse lime and then suck on it real quick, works great. Learned this from years of bartending-always works Cathy
Good morning-Every time I read about transplant in a controversial sentence I get my blood boiling!! I am a cc survivor because of a transplant. What can I say it works. My tumor was inoperable and this was only hope. Barnes- Jewish just openned a new transplant center and was quoted in paper as needing one because it is one of the “few cholangiocarcinoma centers in the nation”!! We are getting press. Kinda of interesting about gall bladder comment because they took mine along with liver!! We must pursue aggresively transplantion!! Cathy
Kim-Your story is a WOW!! I to am a cc survivor. My miracles started the day I was finally diagnosed. I survived because of amazing cutting edge doctor, Dr. William Chapman. I was his third patient in the clinical trial for transplantation as a cure. I was so lucky because we skipped the whole “go home and be comfortable” stage. I was given “HOPE” from the start.
I have posted on here several times my story, not to brag or say look at me, but to give hope. Hope is the main drug for this disease.
I have no witty words or inspirational sayings to end this post other than just keep praying and believe. Lots of prayers- CathyAEW- Welcome to this wonderful” boat” of people. I am a cc survivor. I was only 53 when diagnosed so 62 is young. I also had no symptons just very itchy. I had a little bit of a rocky road getting diagnosed. What saved my life was educated doctors. I was treated at Barnes-Jewish in St. Louis, MO. Barnes and Mayo clinic are cutting edge hospitals for disease. I would think about getting information from a larger hospital such as Vanderbilt. Teaching hospitals tend to be more advance in there knowledge of rare cancers such as bile duct. Don’t be afraid to get another opinion if you don’t like what you hear, this is a very tricky cancer. I am alive because of a cc clinical trial involving a liver transplant ( I ended up getting 2!!) Good luck and lots of prayers there is hope _Cathy
Grouchy-Ness is ok. After my first transpalnt I was sleeping a lot and wanted to go to back to bed all the time, making my sister and daughter very annoyed with me. Long story short, I ended up having dangerously low potassium levels. I was put on major potassium pills and with in a day a major difference. Talk to your doctor about blood work to check, couldn’t hurt. Lots of prayers-Cathy
Samlee-I am a cc survivor. I am alive today because of the power of prayer and the worlds greatest doctor, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis, MO. Barnes is #9 in nation. I have posted many time about how lucky I am to have ended up at Barnes in a clinical trial for liver transplant. My tumor was inoperable and only hope was a transplant. Barnes and Mayo Clinic are the 2 top hospitals in this trial. Listen to this site and all the info because most GE’s have no expierence in this cancer and it shows up with negative results. The first words out of my doctors mouth were “I know what I am looking at and know it will come back negative” those words saved my life.
My diagnose was also made through an ERCP and no symptons except itching. If you need help and answers you are on the best place to find it. Feel free to contact me if you need more help. Good luck and lots of prayers-CathyTom-so interesting to here from you. I am Barnes #1 fan. My diagnose was so quick and unexpected and treatment so immediate I never had to weigh any information. The only thing I ever googled was an ERCP, which thank god I did because when scheduled at Alton Memorial I was told I could eat drink and drive myself!! God stepped in and started his first of many miracles at Barnes. I always post here on my positive expierence with cc-kinda of an oxy-moron!! I just hope my expiernces will give hope. Hope was something we found plenty of with all my Wash-U doctors, I coded and they never gave up. When I awoke from a 3 week coma, we joke they were just as amazed.
I wish good you luck at St. Johns, but I have a funny feeling they will be referring you back to Barnes. Good luck and lots of prayers
