1

(11 replies, posted in General Discussion)

Ruali, I am sorry about your mom, but am excited to tell you I am almost 5 years cancer free and I had hilar cholangiocarcinoma. I have an amazing story to share and our Foot loose Notebook has a video I made with my Hero Dr. William Chapman. Having hilar with no mets could make your mom a candidate for a transplant if she has the right doctors. I am alive because of a transplant. (I had 2). When I was first diagnosed my doctors exact words were "I know it will come back a false negative but I know it is CC", he was right it took 2 weeks to get a positive reading.
Please email me jrdunnagan@gmail.com and I will be happy to share more info. I know Dr. Chapman is known internationally and I am sure he would be a well of info for you.
There is HOPE!!
Lots of prayers-Cathy

You might want to check past post from Tiff she was Dr. Javle's patient at MDAnderson and had her transplant at Methodist, so she would be a good source.
Lots of prayers-Cathy

3

(10 replies, posted in Introductions!)

Carolyn, Welcome and sorry you had to find us. I am almost 5 years cancer free!! There is HOPE!! I also had a daughter in college when diagnosed and my first question to my hero, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. was, "will I see Cates graduate and he said "YES"!! I am proud and excited to say almost 2 years  after diagnose I did!!
I have an amazing story to share and was so honored to tell it and be asked to do a video for Barnes about it. I also was honored to tell it for Relay for Life. Please don't think I like to talk about myself but I am alive because of the love of a great family, the power of prayer, 2 strangers and Dr. William Chapman. I keep all of this on my FB page Catherine Sims Dunnagan to give HOPE!!
I am proof that there are miracles and that there is HOPE!!
Please email, friend me, or call (618-567-3247)if I can help or just need to talk.
Lots of prayers-Cathy

Surfer, Congrats and lots of prayer for an easy and successful surgery.
Keep posting and inspiring our CC family!!
Cathy

Carla, Welcome and sorry you had to find us. A second opinion is very important, our cancer  is very rare and many doctors are just not knowldegable in treating this cancer.
I am a CC survivor and my miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Thanks to our CC forum I have been able to put his name out there and at least 4 people have had there non-surgical diagnose changed. Dr. Chapman is so much more  than a great doctor, he is a kind passionate man. Dr. Chapman is also phone friendly and knows time is not our friend and will get things moving quickly, he also will not have you go through  the expense and time of coming to St. Louis if he couldn't help you.
You can read my story under the loose leaf section of our forum. Please contact me (618-567-3247) or email if you would like to talk or if I can help.
Lots of prayers-Cathy

Hi Welcome and sorry you had to find us. I am a CC survivor and know how important second and third opinions are and how they can and do change your treatment. My miracle worker is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. and because of him I was given HOPE right from the start and never needed another opinion. I know that sounds far, my story has brought 4 people from FL. SD. CT. who with one phone call were given HOPE and came to St. Louis and had there diagnose changed for the better. Dr. Javle at MD Anderson, Dr. Fong at Cleveland Clinic, Dr. Kato in New York are all doctors who have had great success treating our cancer. Please feel free to contact me if I can help
Lots of prayers for HOPE
Cathy

7

(9 replies, posted in General Discussion)

Nikki, you are an amazing daughter. I always tell everyone, that I had the easy part of this nightmare cancer, all I had to do was be sick. My husband, daughter and sisters had the hard part, they had to take care of me and then continue there life like normal. My husband had to run a business and Cates had to go back to school all while making sure I got to chemo, doctor appointments, never alone when hospitalized, never left in the house to long alone, and after the second transplant we added diaper changing, feeding tube, drains.... and yet all I did was be sick, so much easier than what you have to do as a daughter who loves her dad.
Lots of prayers and HOPE for answers and peace.
Cathy

8

(14 replies, posted in Introductions!)

John- BRAVO!!! I am 2 months short of saying 5 years cancer free!!! Thanks to a transplant!! I too did the Mayo Protocol at Barnes-Jewish in St. Louis MO with Dr. Chapman, my hero. I had my first transplant May24,2009 and then on July 4, 2009 I awoke vomiting blood and was basically bleeding out because radiation had caused my hepatic artery to rupture. Thanks to God and Dr. Chapman I received the gift of life again with just barely 24 hours to live. 2009 and 2010 were rough years. I also contracted CMV!! I am excited to say I take 2 pills every 12 hours to stay alive and other than that life is normal!!!
I was privileged to be asked to do a video for Barnes and you can watch it at www.barnesjewish.org/patientstories/cathy
John please keep posting, people need to hear success stories, you are an inspiration and HOPE to our CC family!! (Don't wait another 6 years to post LOL!!!)
Lots of prayers for many more 6 years-Cathy

9

(8 replies, posted in General Discussion)

Meghan, I just wanted to touch base again and to say that my hero Dr. Chapman is so approachable and not intimidating. I suggest you start calling him (of course LOL!!) or Dr. Kato, or MDAnderson and start getting another opinion, time is not a friend to cholangio!! I can only speak from my own expiernce, that Dr. Chapman will act quickly and when you hang up and think "why didn't I ask that", he will not be annoyed. When I was diagnosed, he held my hand and told me what to google when I got home, no God like arrogance in this man!!!
Lots of prayers and HOPE for your mom and family-Cathy

Marion, is a percutaneous bioposy a needle bioposy?? I had my bioposy done  during my first ERCP, and my doctor knew right away I needed a transplant, but he did a brushing, not a needle bioposy and he also knew it would come back a false negative, which it did. My trial was the Mayo protocol.
Cathy

Ben, I am glad my post are public!! If my information on this journey ends up being read by some one looking for answers and HOPE, I have paid it forward and honored my donors and doctors, who gave me a story!! I am excited to say numerous people have contacted Wayne and I about our hero, Dr. Chapman, because of google showing our posts on CC site and at least 3 people have had there diagnose changed from hopeless to resections and HOPE!!
PLEASE do not change this!!
Lots of prayers for HOPE for our CC family-Cathy

Patty, sorry about your treatment the last year and more sorry that insurance help mandate it.
I too also stayed away form here while I was sick, just didn't  have the stamina to look past the  bad news. I now post more often because having the right doctor is the key to fighting this. I post because I was so blessed to have this expierence and didn't have to waste time finding it. Our Wayne Parson always post that if "they had found Dr. Chapman sooner, Val would still be here".
Keep posting and inspiring others. I honestly believe in the last couple of years our site has more positive and encouraging info and stories than back in 2008 when I joined, which shows this site has made a difference.
Lots of prayers and HOPE-Cathy

13

(9 replies, posted in General Discussion)

POST POST POST!!!! Anytime "Cholangiocarcinoma" is in sentence it needs to be out there!!! Anytime we get a marketing video it REALLY needs to out there!
I posted on my FB page and asked everyone to share because you don't know when your friends cousin sister hisband is looking for HOPE!!
Thank you for helping me share a story that wouldn't have happened with out God, 2 strangers and Dr. Chapman.
Thanks-Cathy

14

(9 replies, posted in General Discussion)

I just wanted to post the correct link to Barnes's video for cholangiocarcinoma. It is very exciting to see our cancer get its own video and recognition. I HOPE this video will change some one else's life. www.barnes-jewish.org/patient-stories/cathy
Thank you, God, 2 strangers and Dr. William Chapman for giving me a story to share.
Lots of prayers for HOPE-Cathy

I am a CC survivor due to 2 liver transplants. My hero is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman is a very knowledgeable aggressive surgeon for CC, but he is not a risk taker giving false HOPE. I know he has changed several peoples diagnose, maybe not by a transplant but by resections. Dr. Chapman and I did a video for Barnes and you can watch it at www.barnes-jewish.org/patient-stories/cathy  He is also very phone friendly and will act quickly as he knows time is not our friend. Dr. Chapman saved my life twice and is a doctor with so much heart and soul.
Lots of prayers for HOPE-Cathy

16

(14 replies, posted in Introductions!)

GSKelly-Welcome and sorry you had to find us. I am an almost 5 year CC survivor due to my hero Dr. William Chapman at Barnes-Jewish in St. Louis MO. I can not tell you enough how important a second opinion is, our cancer is very rare, very complicated and that leads to many opinions. I will be heading to Florida next week to spend time with another CC survivor who was given no HOPE by two major cancer centers on the east coast, but found my story and contacted Dr. Chapman and he was able to do a resection!! I can not say enough about the heart and soul of this doctor. I do know he is very phone friendly and will give you answers quickly, because he knows time is not our friend. A second opinion can only validate what you already know, or give you HOPE. Dr. Chapman and I just did a video for Barnes and you can watch it at www.barnes-jewish.org/patient-stories/cathy under patient stories. I also keep my story posted at www.catherinedunngan.com
Please feel free to contact me if you want to tall or if I can help, jrdunnagan@gmail.com or 618-567-3247.
Lots of prayers for HOPE-Cathy

Lisa, Another when "when life gives you lemons make leomonade" moment!
I always had to remove my pump everyday for radiation, so it is really easy to
reset and has lots of alarms for all bad things that can happen! I really think I carried mine on my shoulder more and it has long IV cord so you can remove around a room with out carrying all the time, there was times I would get up and get a quick jerk cause I forgot about it on the chair!!! lol!!
Enjoy your party!
Lots of prayers-Cathy

Lisa-LOL!!! I wore the 5FU pump 24/7 for 6 weeks while doing radiation. The worst part of it was the "ugly fanny pack"!! My radiation oncologist, Dr. Parik (he bought his wife one of the Runway show dresses, very hip guy) and I spent many visits discussing the need for Coach/Kate Spade... to design something more hip!! I saw him a few months ago and he said I would be happy to know there was a few more options now!! (Not sure if he was joking)!!
The wearing of it was no big deal, the only major change was me and my husband changed sides of the bed, so it could rest on nightstand!! I would meet up with nurse once a week to change chemo bag, and you will have to change batteries (which they provide).
Good luck!!
Lots of prayers and HOPE-Cathy

19

(9 replies, posted in General Discussion)

CC family I am so excited I got the opportunity to pay it forward. I was asked to make a video with my hero, Dr. Chapman for Barnes-Jewish Hospital!! Dr. discussed cholanagio a little, (they took a 2 hour taping into 4 minutes!!) but our cancer's name is out there and hopefully this will give HOPE to someone else looking for answers.
I am not sure how to post video or article but for now I keep both posted on my FB page Catherine Sims Dunnagan. (When I figure out how to link I will, the original link is www.barnes-jewish.org Please feel free to share, we were all just reminded by Patty's story how far our news travel!!
Lots of prayers for HOPE and miracles-Cathy

Have to disagree with transplant common, May 24 2014 is my 5 year cancer free anniversary! That sounds pretty survivable to me! Maybe he was referring to ICC??
Cathy

Betsy-Congrats, we need more "feel good there is HOPE" stories like yours. I will be 5 year cancer free May 24, 2014 thank to a transplant!!
I am curious though why would you need a transplant if you are cancer free  and at the 5 year mark??
Lots of prayers for more milestones-Cathy

22

(15 replies, posted in Introductions!)

Brenda, I am glad Kenny is going to talk to someone. There was a gentleman who was a CC transplant after me and has an amazing story to share. believe his name was Mike(??) and he will inspire Kenny.
Your MELD score is good but not high enough to get to top of list, but the higher the MELD score that means you are in major liver failure, which you don't want but... it is kinda of catch-22. Dr. Chapman is very aggressive in constantly applying for more points, I believe I started at 26 and ended up at 32 in a 5 month period. Your blood type determines which list you are on. I was B+ so I had a shorter list, but then you have a few less blood types to receive organs from, it is all catch-22!! Dr. Jeffrey Crippin is my liver doctor and another kind, down to earth good man, who is so approachable and easy to talk to, you will love him. Barnes was so good to me and they always managed to get everything approved, you are in good hands.
Good luck Monday and please call if you need a friend or directions in St. Louis, MO. (It is going to be real cold!!) (618-567-3247)
Lots of prayers and  HOPE-Cathy

23

(15 replies, posted in Introductions!)

Brenda-I am glad you got to expierence  Dr. Chapman, you now know why Daisy and I think he walks on water. I am feeling so blessed and privileged because today is the start of my "5 year cancer free year" and tomorrow I will make a marketing video with Dr. Chapman for Barnes!!! My CC family can rest assure I am going to use the word "cholangiocarcinoma" as often as I can!! LOL!! I can never post or say enough that I am alive because of God, 2 strangers and Dr. Chapman.
Brenda, I am not sure how far you travel but if I can help on your visit Monday, please ask. I would love to help give your husband HOPE!!
Lots of prayers and HOPE-Cathy

24

(7 replies, posted in Introductions!)

Tara, Welcome and sorry you had to find us. I am glad surgery is an option. I will be a 5 year CC survivor in May. I was very lucky to be able to have a transplant. I am curious if that was an option discussed?? I have an amazing story to share and keep it posted on my web page www.catherinedunnagan.com under the telegraph link
Lots of prayers and HOPE-Cathy

25

(11 replies, posted in Good News / What's Working)

Dasiy, I think sending a picture of Mom and her trophy, might sound "mean spirited" but maybe it will humble them enough to step out of there comfort zone and be the doctor they should be!!
Lots of prayers, love and Hope for an amazing family-Cathy