jathy1125
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Mom, Welcome and sorry you had to find us. I am a CC survivor. I had 2 liver transplants, I will be 2 years cancer free May 24, 2011!! My clinical trial involved chemo and radiation. My chemo drugs were IV gemcidabene and 5FU chemo pump while doing radiation. (Radiation was 5 days a week for 6 weeks). I then took Xeloda an oral chemo while waiting for transplant. I never lost my hair and my naseau was controlled with meds. My biggest sympton was tiredness but naps and rest made it bearable.
You can read my story at http://www.thetelegraph.com under christmas miracle, it is full of hope.
Lots of prayers-CathyHi Jackie, welcome and sorry you had to find us. I am a CC survivor due to a liver transplant. I will be cancer free for 2 years on May 24,2011.
Unfortunately negative biopsies are very common, I was lucky and had a doctor who knew it wasn’t negative. I love sharing my story because it is the one way I can honor my donors. (I had 2 transplants) You can read my story at http://www.thetelegraph.com under christmas miracle.
I did chemo and radiation first and there is no hair loss, naseau is pretty much controlled by lots of different meds, and tiredness is pretty minimal nothing naps can’t help. The worst for me was after all treatments, about 4 months total, being very wiped out. It is now 2 years later and celebrating my first health mothers day-there is hope.
I always tell people about Barnes-Jewish Hospital in St. Louis MO. it is one of the few CC centers in the country and is headed by Dr. William Chapman, he is a miracle worker!! Please feel free to e-mail me if I can help.
Lots of prayers-CathyDebora-Welcome and sorry you had to find us. I will be 3 years cancer free on May 24, 2011 due to a liver transplant!!! I really ended up having 2. I would love for you to read my store at http://www.thetelegraph.com under Christmas miracle, sharing my story is the one way I can honor my donors and pay it forward.
I would suggest since you are in Wisconsin you contact Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Barnes is one of the few cholangio centers. Dr. Chapman is the most amazing man and doctor.
My understanding about cc is a transplant is one of the few cures, since everything including bile ducts are removed.
Please feel free to email me if I can be of any help.
Lots of prayers-CathyJeff, Welcome and sorry you had to find us. I am a cc survivor! I was 52 and healthy when my “ton of bricks ” came down on us. I also was inoperable. I was very lucky because I was diagnosed at Barnes-Jewish Hospital in St. Louis MO by Dr. William Chapman. The hospital is one of the few cc centers and Dr. Chapman is a the most amazing man and doctor you will ever encounter, I am only alive by the grace of God and him. I ended up having 2 liver transplants!! You can read my story by going to http://www.thetelegraph.com under Christmas miracle . Since you live in the midwest I would contact his office.
Please feel free to email if I can help or answer any questions. I will be 3 years cancer free May 24,2011!!
Lots of prayers-Cathy (618-567-3247)Chan- I am so glad your dad has hope. Everyone on this site knows Dr. Chapman is my hero. I understand exactly how you feel about not needing another opinion, he just has a way of letting you know you are in the right place. That is one thing I try to tell everyone, that I skipped all the “diagnose nonsense step”. I had been a caretaker for my mom for 14 years who had a major stroke, cancer, lung, and heart problems so I realized right away how different this expierence was.
I live 25 minutes from Barnes so if there is anything I can do for you, please call. Tell Dr. Chapman and his staff his “miracle” is headed to the beach just as he promised!!!
Lots of prayers and hope-CathyDear Anne- Welcome and sorry you had to find us. I think Lainy’s idea to call medicare would cut to the chase. I also noticed you mentioned Columbia MO which is only 90 miles to Barnes-Jewish in St. Lousi MO. Barnes is one of the few cc centers, it also has on staff the man who saved my life, Dr. William Chapman. You can read all mine and other post on this remarkable man.
Lots of prayers and hope-CathyI am so excited for you, I can never say enough about this man. His doctoring skills are the worlds greatest, but it is soul that will move you.
The day before my story was in the paper I received a hand written note from him telling me how wonderful I was and how priveleged he was to take care of me and my family!!! Have you ever heard of anything so crazy. I will always say he is who you want your children to grow up to be-he is a hero!
Good luck and please contact me if you want to talk. Thanks to him I am taking my first vacation in 21/2 years. I am headed to Miami to enjoy sun, sand and my daughter. I remember when I didn’t know if this would ever happen again, but Dr. Chapman did!!!-Lots of prayers and hope-Cathy
jrdunnagan@gmail.com 618-567-3247Hi- and like everyone else, sorry you had to find this amazing group of people. I am a CC survivor. I am alive because of Dr. William Chapman. I can never post enough about this incredable man. He saved my life twice. I was lucky because I was diagnosed by the best and was always given hope. My tumor was in the bile duct and inoperable. My only hope was a transplant. You can google my story and read it at the telegraph.com under christmas miracle.
I am sure there are good oncologist in Oklahoma City, but our cancer is so rare you need a major institution. Most of those are usually teaching hospitals also. My advice is to head to St. Louis, MO to Barnes-Jewish. Geographically it is your best choice.
Please feel free to contact me (jrdunnagan@gmail.com). I know you will get great advice and hope from Dr. Chapman.
Lots of prayers and hope!!-CathyHi- Ginny I am a CC survivor because of a transplant. I am alive because of Dr. William Chapman at Barnes-Jewish Hospital St. Louis, MO.
I was diagnosed July, 2008 and did the clinical trial involving radiation and chemo. I was transplanted May 24, 2009. I had a second transplant on July 4,2009!! I am a miracle.It will be 21/2 years from diagnosis and I am finally good!! I am alive only because of God and his miracle worker Dr. Chapman. You can read my story at thetelegraph.com under christmas miracle.
I would love to talk to you so feel free to contact me at jrdunnagan@gmail.com. There is HOPE!!!!
Lots of prayers-CathyWow Jenny, I am a CC survivor due to a liver transplant!! I had 2 “fake calls” before I got the real thing. I will be transplanted 2 years May 24!! I had mine at Barnes- Jewish in St. Louis MO. If you would love to read an amazing story about it go to thetelegraph.com under christmas miracle.
I will be celebrating my first vacation since my diagnosis this year buy heading to your great state for Sturgis!! (Still have issues about motorcycling and my new liver)
I have found that cancer does rule your life and that is ok. At first it is the fight and then when you get to the survivor stage there is oh my gosh what just happen and finally the pay it forward by sharing your hope. It can’t help but define who you are.
Please email me if I can help and give you some info about post transplant. I am down to minimal immune-suppresant meds. I went from 38 pills to 12!!!
Good luck and lots of prayers-Cathy jrdunnagan@gmail.comTim-Welcome and also so sorry you had to find us. There is hope. I am a CC survivor. I am alive because of a transplant. I also had one of the nations top doctors, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I have an amazing story to share so please feel free to call 618-567-3247 or email
jrdunnagan@gmail.com You can also read my story at thetelegraph.com under christmas miracle.
You need to act quickly as Jim said because time is your enemy. I suggest you google Dr. Chapman and Dr. kato. Barnes and the Mayo both have the same clinical trial for CC. Resection and transplant are your best hope for cures. Make sure you ask your doctor about both and don’t rule them out till someone who does transplants and resections say they are not option. This a rare cancer and so misdiagnosed and treated.
Lots of prayers-CathyDear Donna-I am a CC survivor, I also was stageIV and inoperable. I was blessed because when I was diagnosed I was put in the hands of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I had a transplant.
I suggest you take lots of notes and ask any question, no matter how silly when talking to your oncologist. Get his opinions on transplant trials and liver resection, these are really your best options to be cured. Jim Wilde post on here about his resection and his “miracle worker doctor”, read his post. Ask your doctor about his doctor and about Dr. Chapman. These 2 doctors are the top of there field in treating CC. Get as many opinions as you need you will know when you have heard the right one. There is HOPE.
You can read my story at thetelegraph.com under christmas miracle. I am alive because of the power of prayer and one of the worlds greatest doctor.
Please call me 618-567-3247 or email me if you want to talk or vent.
Lots of prayers-Cathy jrdunnagan@gmail.comJim-I think it is an omen you posted under “Good News”. We are rooting and mostly praying for you!-Lots of prayers-Cathy
Dear Ellen, like everyone has said “welcome and sorry you had to find us”. I always introduce myself as a CC survivor, because I am one of the few but we are out there. There is hope . I was diagnosed July 2008 with inoperable. My miracle started by being put in the hands of Dr. William Chapman (google him) at Barnes-Jewish St. Louis, MO. He told me my only hope was a transplant. I ended up having 2 transplants.
MD Anderson is one of the leading cc sites, so you have HOPE.
You can read my story at thetelegraph.com under christmas miracle.
Keep posting there is lots of love to be had here.
Lots of prayers-CathyMonica – I did chemo (gem) then I did 6weeks of 5days a week radiation with a 24 hour chemo pump. I then did oral chemo (Xeloda) for about 5 months while waiting for a liver. I started my treatments in September, with very little side effects. I was usually tired for about a day, a few days after my chemo. I usually had a “chemo buddy” for treatment and we usually had lunch after and shopping. It was the end of December, about a week after last radiation treatment when I started to feel real wiped out. I was never bed ridden but me and my recliner were best friends. I missed one chemo because of blood counts. I never lost my hair.
Make sure you take nasuea meds before.during and after. My oncologist gave me 3 (compazine, lorazapan and zofran) so I didn’t have to wait hours in between. She also put me on very low dose of lexipro (anti-depressant).
Lots of prayers-Cathy
