jathy1125
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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 http://www.barnes-jewish.org/patient-stories/cathy under patient stories. I also keep my story posted at http://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-CathyLisa, 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-CathyLisa-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-CathyHave 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??
CathyBetsy-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-CathyBrenda, 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-CathyBrenda-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-CathyTara, 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 http://www.catherinedunnagan.com under the telegraph link
Lots of prayers and HOPE-CathyDasiy, 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-CathyMary-Congrats-Dr. Chapman is an amazing man. Every time I read his name, I tear up!! Please call (618-567-3247) f you would like to talk, he saved my life twice!!! I am so excited I am doing a video with Dr. Chapman, any time I can say thank you to the two strangers and doctor who saved my life, I am there !!
Lots of prayers and HOPE-CathyMERRY MERRY CHRISTMAS!! Did mom jog home after hearing the news??!! LOL!!!!
Lots of prayers and HOPE for many more clean scans-CathyMargaret, Welcome and sorry you had to find us. This site is amazing because people get it, people who haven’t “walked a mile in our shoes” think or try to get it but real can’t grasp how CC takes you from normal to hell in moments. Sometimes it is hard for me to post on this site because I am 7 months from my 5 year cancer free mark which means I won while so so many aren’t. The reason I am posting is because of your comment about “like a bomb exploded and life keeps going on”. Surviving cancer should mean sunshine and lollipops but life isn’t as simple as it should be, so I sought therapy and it was such a major help. My therapist after crying and being in a state of awe over my story, held my hand and said “Cathy you have PTS, what did you expect “. Margaret, I can’t express enough how much talking to some one who really had no majic pill or cure helped, because she got it. Margaret, I have a feeling you would have the same diagnose.
Margaret my heart breaks for you and and your family, and I can only offer my prayers, love and support, keep posting.
CathyMary-Welcome and I am sorry you had to find us, but I am excited to tell you that I am a CC survivor, thanks to the most kind compassionate doctor, Dr. Chapman. That man will walk across hot coals and shark infested waters to save your life if he thinks there is a chance!! I know I sound a little over the top, but he saved my life twice, with the help of God, and 2 strangers!! I just got to be a part of a wonderful family and there journey when they came to St. Louis to have there CC diagnose changed from no surgery no HOPE to a resection and HOPE!! I share my story at http://www.catherinedunnagan.com under the telegraph link.
Please email me (jrdunnagan@gmail.com) or call 618-567-3247 if you would like to talk.
Lots of prayers-CathyI had hilar cholangio. Glad is ulcer under control, please call any time. I have an amazing story to share and I wouldn’t be here to pay it forward if it wasn’t for God, 2 strangers and Dr. Chapman, telling my story is one way I can honor there memory, kindness, amazing doctor skills and heart.
Talk soon.
Lots of prayers and HOPE-CathyDear Angel, sorry to hear about your uncle. I am a CC survivor because of 2 transplants. I would love to talk to you so feel free to call me (618-567-3247) or email me jrdunnagan@gmail.com I am glad your uncle is in the hospital being monitored because an undetected ulcer started the reason for my second transplant. I do know it is rare but can usually be treated with a graph.
Lots of prayers and HOPE-Cathy
