Marion and Cathy-
Since my reoccurrence in Oct and the subsequent Whipple, I've had some complications.  I have no hepatic artery; the only blood flow to my liver is collateral from my Roux-en-y.  I'm relisted for tx with a Meld of 8.  The left lobe of my liver is necrotic but the right lobe seems to be working properly.  Labs are decent and mostly within normal range. 
Day to day life post tx was basically normal but some things have changed post Whipple.  I don't know if it is the necrotic liver, after effects of surgery, getting older, etc.  but I tire more easily and it takes me longer to recover.  Eating is different and I'm much more sensitive to food than I used to be. 
That being said, I'm alive and fairly well.  I have a 4 yr old who most days I can keep up.  I even "coached" her spring soccer team. 

As far as meds, I'm on prograf, prednisone, protonix, Coumadin, ursodiol, mag + protein, mag oxide, fish oil, and a multivitamin.

Cathy- what meds are you on?  Did they remove the spot on your lung?  How big was it?  Mine was only 3mm.  What is your protocol now?

Happy Wednesday!

Cathy, I bumped and updated my original post in the transplant section.

Bumped for Cathy. 

Update:  In Oct 2012, I experienced some RUQ pain.  My tx coordinator ordered a CT scan and a spot was discovered in my native bile duct.  Two ERCPs later, it was determined that my CCA was back.  I ended up having a Whipple on Oct 24, 2012 in Louisville. i had some complications and ended up back in CA at UCLA.  I ended up staying in CA for another 3 months and returned home in January.

Primary sclerosing cholangitis … is/DS00918

Depending on the source, 10%- 30% of people with PSC will develop CCA but not all CCA patients have PSC. 

PSC wasn't found until after my CCA diagnosis.  In fact, I had never heard of PSC until I woke up from my liver tx (approximately 2 months after my CCA diagnosis).

My backstory:
Diagnosed Aug 6, 2010 at age 28
Liver Resection Aug 12, 2010- remaining liver failed
Liver Transplant Aug 25, 2010

Normal MRIs for 2+ years
Fast forward to Oct 1st- I wake up in the middle of the night to excuriating pain that radiates from the center of my back to my sternum wrapping around my right side.  Blood work, CT scan, 2 ERCPs later, it is determined that my CCA is back and in what is remaining of my native bile duct. A PET scan shows no evidence of metastatic diseases.  My doctors have decided to do a Whipple.  Surgery is scheduled for Monday Oct 22. 
Does anyone have experience with the Whipple?  Also any literature regarding the Whipple post tx would be appreciated.


(7 replies, posted in General Discussion)

Thank you both for your responses.  My surgery is scheduled for Monday.  I guess we shall see...

Susie~ was your mass removed laparoscopically?  How long were  you in the hospital?  Recovery time?

Marion~ I understand mets to ovaries are rare.  Do you know if this member had mets elsewhere or was it contained to her ovaries?  My liver surgeon asked me this question this afternoon.


(22 replies, posted in General Discussion)

Best of luck to you!  Praying for you, your family and your surgeons!

Does anyone have any experience with CCA reoccurrence in the ovaries?  Yesterday during my two year scan, a mass was discovered on my right ovary.  An ultrasound was done today; it is non vascular and solid.  Radiologist and my tx coordinator think it is likely benign but of course, my mind has raced through all the possibilities.  I see a gynecological oncologist in the morning.  Dr. Google hasn't been helpful in finding much information.
Thanks for any and all information.

My transplant took place at UCLA.  Dr. Busuttil is an amazing man and one of my heroes.  I can not say enough about him and his team.  If anyone has any questions, please feel free to contact me.

I posted this in the introduction section but was asked to post my story here also.  I've added a few details here regarding my transplant. 

Hello all!  My name is Rachael; I'm 28 years old.   On Aug 6th 2010, I was diagnosed with cholangiocarcinoma.  I found a wonderful surgeon, Dr. Marvin, at Jewish Hospital who was willing to take a chance on me and perform a liver resection.  On Aug 12th,  my 9cm tumor and 70% of my liver were removed.  The surgery was proclaimed a success and for a few days, everyone was very optimistic.  Unfortunately, my portal vein clotted and my remaining liver began to fail.  Several surgeries were performed to try to fix the problem but they were unsuccessful.  By some stroke of luck,  UCLA was contacted and  Dr. Busetill agreed to take me as transplant candidate.  On Aug 23, I was flown while on advanced life support to CA.   On Aug 25th, I received my new liver.  I had several more surgeries to correct some portal vein issues and hematomas.  In total, I had 16 surgeries and spent more than 3 weeks in the ICU much of the time on advanced life support.  After I left the hospital, I spent another 6 weeks in CA and was finally able to return home on Nov 10th.   Originally, I was supposed to undergo chemo but after much discussion and thought, it was determined to pose more risk than benefit. 
If anyone has any questions at all, please feel free to ask!!


(10 replies, posted in Introductions!)

Thank you everyone for your kind words!!!  Sorry it has taken me so long to answer questions and reply back.  Christmas Day was my 4 month anniversary of my transplant and what a wonderful day it was! 
Regarding questions about my chemotherapy, it was orginally scheduled to start mid-November.  I met with an oncologist back home in KY who refused to treat me; he felted like my WBC was too low to survive the chemo.  I met with another oncologist who was very honest about my potential risks.  Kidney failure and serious infection being the two main ones.  After much thought and talk, we decided to decline chemo.  My oncologist agreed.  My husband started having doubts two days later and after pestering everyone at UCLA, he finally got through to Dr. Busettil.  After looking at the pathology of my orginal tumor and consulting with a colleague, Dr. B agreed that chemo for me had more potential risks than proven benefits.
Jathy1125-  We have more in common than you realize.  I graduated from Murray State in 2005!!!


(10 replies, posted in Introductions!)

Hello all!  My name is Rachael.  I am a 28 year old mother to a sweet 21 month old little girl.  On Aug 6th 2010, I was diagnosed with cholangiocarcinoma.  Since  then, I've had 16 surgeries including a failed liver resection at Jewish hospital in Louisville, KY and a liver transplant at Ronald Reagan Medical Center in CA.  Dr. Marvin, my surgeon, took a chance at removing my 9cm tumor and 70% of my liver.  Unfortunately, my portal vein clotted and caused my remaining liver to fail.  By some stroke of luck, Dr. Busetill at UCLA agreed to take me as transplant candidate.  On Aug 23, I was flown while on advanced life support to CA.  On Aug 25th, I received my new liver.  I spent another 3 weeks in ICU and was on life support for alot of it.  I finally was able to return home to KY last week.  In hopefully my last step of this wild journey, I start chemo this week. 
I look forward to getting to know you all.