• From: Paradise,Ca. USA
  • Registered: Fri, 06 Jul 2012
  • Posts: 5

Topic: Hello

My wife has had a history of ERCP's to remove liver stones from her bile duct since her gallbladder was removed when she was 23, she is now 46. The last one resulted in a stricture of the left and right bile duct and not a stone. The imaging shows a Klatskin type Tumor but the biopsy was inconclussive. They will take another biopsy on tuesday. We were told that it was not resectable and referred to UCLA for a possible liver transplant. I have also applied to Mayo and MD Anderson. Has anyone here received treatment at UCLA or UCSF? Thank you all so much for sharing your stories and knowledge.

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,219

Re: Hello

Hello Jim and welcome to our extraordinary family but sorry you had to join us.
Sometimes it takes more biopsies to make a CC DX but either way we are big believers in 2nd and 3rd opinions. Mayo Rochester, MN and MDA Houston are 2 of the very, very best for CC.  Also UCSF is excellent. I know you will be getting a lot more advise on this subject so hang in here today. You are already doing the right things by seeking other opinions and you have come to the right spot here.
Please keep us updated on your wife as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Pam
  • Champion
  • Offline
  • Registered: Fri, 11 Jun 2010
  • Posts: 292

Re: Hello

Hi Jim,  I'd also like to welcome you to this site and say I admire your diligence in seeking the best treatment for your wife.   Come back as often as you need.  There are so many caring people here.  Pam

  • eli
  • eli
  • Legend
  • Offline
  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 562

Re: Hello

Jim, welcome to the forum.

I'm sure your doctors mentioned this, but I will say it anyway. Inconclusive biopsies are very common. A positive biopsy is not required to establish the diagnosis. The doctors can diagnose CC based on other tests: ERCP, CT, MRI (MRCP), PET, Endoscopic Ultrasound, tumor markers, etc. That said, a positive biopsy is very beneficial to have. It gives more confidence to the patient and the family that CC diagnosis is the right one.

Best wishes,
Eli

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Hello

Jim....welcome to our site. I am wondering as to who is working with your wife. As far as I know:  Liver transplantations have a strict protocol such as fine needle aspiration - FNA (biopsy) of the lymph nodes (not the actual tumor) by endoscopic ultrasound (EUS). Other tests such as liver MRI, chest CT, ERCP or PTC, etc. also are required. 

Given your home location I thought to include a link to UCLA: http://transplants.ucla.edu/body.cfm?id=37

Our jathy has written extensively about her transplantations.  You might want to take a look at her postings:
http://www.cholangiocarcinoma.org/punbb … er_id=5322
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Gavin
  • Gavin
  • Moderator
  • Offline
  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: Hello

Hi Jim,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your wife as well. But I am glad that you've joined us all here as you've come to the best place for support and help, and I know that you will get a ton of both from everyone here.

There's not really much that I can add to what the others have said to you regarding treatment centres but I just wanted to stop by here and say hi and welcome you here. And I am sure that you will get a load of responses to your question and that members will come forward and share their info and experiences with you.

I know you'll have other questions to ask as well, so please feel free to do so and we'll do what we can to help in answering them. Please, keep coming back here and let us know how things go for your wife. We are all here for you and we care.

Best wishes,

Gavin

  • From: Paradise,Ca. USA
  • Registered: Fri, 06 Jul 2012
  • Posts: 5

Re: Hello

Thank You All So Much! I will keep you posted, and I will be asking many questions I'm sure. We are going to the San Francisco Zoo today, and went sailing on the Bay yesterday as we are trying to live in the moment that God gave us today. We go for another biopsy via ERCP tomorrow and should hear from UCLA today. Thank You All for your support as it is very helpful to Denise & I to feel that we are not in this alone.

God Bless,
Jim & Denise

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,219

Re: Hello

Jim & Denise you are not alone at all, however, I am hghly jealous......the Zoo and sailing on the Bay??? YES! Make those moments regardless of anything else. My husband used to tell everyone that we were on our honeymoon!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Gavin
  • Gavin
  • Moderator
  • Offline
  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: Hello

Hi Jim,

Living life in the moment, yup, that sounds like a good idea to me. And sailing on the Bay, I've never done that but it also sounds real good to me, I am sure that you and Denise enjoyed that loads! Hope that you both enjoy the zoo today, I love going to zoo's! Have a good one and yes, you both are not alone in this anymore.

Best wishes to you both,

Gavin

  • Registered: Thu, 09 Sep 2010
  • Posts: 533

Re: Hello

Jim-Welcome and sorry you had to find us. I am a CC survivor and 3 years cancer free due to a liver transplant!!! I have the most amazing story to share, please read it on my FB page (Catherine Sims Dunnagan). I also keep 2 other transplant stories posted there. There is HOPE!!
I am alive because of God, 2 strangers,  and Dr. William Chapman at Barnes-Jewish Hospital, St. Louis MO. My story is so full of miracles and one of my first was bieng put in Dr. Chapmans care immediately. My diagnose was a complete suprise, I had an ERCP and awoke to be told I had Cholangio, 6-8 months to live and my only HOPE was a transplant!!! The interesting part of my story is I am a California girl, born in San Francisco, raised in Sunnyvale (Our home was $18,000 and no Silicone Valley LOL!!) and lived 5 years in Monterey above Cannery Row!! I had been so whiney about living in the midwest lately, and did God shut me up, Barnes is 25 mins from our home!!
Dr.William Chapman is one of the top doctors for CC he helped develop the transplant trial. When I was diagnosed Barnes and Mayo were the two place offering this trial!!
I suggest you call Dr. Chapman (314-362-5376) he will take your call and talk to you personally before he even sees scans or reports. I can not say enough good about this man he is so much more than a doctor he has a soul. Another interesting thing happenned while I was posting to you, my computer when dead and when I came back to site I noticed a post by treejay on June 30, 2012 thanking Dr. Chapman for saving his moms life, he found Dr. Chapman through our site and traveled  hundreds of miles for his mom to be treated by him.
Please call (618-567-3247) or email me for any info or help I can give.
Lots of prayers and HOPE-Cathy