1

(4 replies, posted in Announcements)

Judy....Gavin is correct, we will be in Chicago for ASCO 2014, May 30 - June 4.  It would be lovely to meet up with you as well as anyone else living in the area.  As many of us can attest to, nothing beats a face to face meeting with those that connect us on this site and beyond.
Please let me know - I will be there to meet you.
Hugs,
Marion

2

(1 replies, posted in Members' Cafe)

Kris.... Dr. Fong has been named Chair of the Department of Surgery at City of Hope, Duarte, California.  His profile will be updated as soon as I receive confirmation from Dr. Fong.
Hugs,
Marion

3

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

Kris.....don't forget to pat yourself on the back.  This has been a herculean effort for both of you. Enjoy, enjoy.
Hugs,
Marion

4

(7 replies, posted in General Discussion)

Crissie..... I suspect that within the next few years we will continue to witness increased research in regards to genetic predispositions of this cancer.  Based on the thousands of posting on this site, less than a handful of people spoke of a direct family member with this Cholangiocarcinoma.  What we do see though is a history of different kind of cancers within families. 
Like you, many of us are worried and concerned, but for the present there are no early detection methods other than what has been mentioned by the nurse practitioner.
The below link might be of interest to you:
http://www.cancer.gov/cancertopics/unde … ing/page23
Hugs,
Marion

5

(7 replies, posted in General Discussion)

middlesister....absolutely, there is a connection.  See below link:
http://www.cancer.net/cancer-types/lynch-syndrome
Hugs,
Marion

6

(4 replies, posted in Members' Cafe)

middlesister.....I have found much comfort in accepting that "grieve is the price we pay for love" followed by the saying that "memories become our treasure".  Your wonderful aunt has touched many lives and now has touched us as well.  May she rest in peace.
Hugs,
Marion

Leslie....please keep us posted.
Hugs,
Marion

Lisa....Congratulations on meeting some major milestones.  It was not easy, but you prevailed with your consistency, determination and a great medical team. 
Although things may not taste well, you must try to force yourself to eat and increase your calorie intake.  Some people find benefit with Cannabis or the synthetic version "Megace."  Although, a high protein intake is of most importance, we found that calories of any kind aided in the weight gain.
Hugs,
Marion

http://smile.amazon.com/

Anju......I would like to add to Lainy's comments that the liver fluke Clonorchis sinensis is also called the Chinese liver fluke.  It belongs to the same category as the human liver fluke, Trematoda, phylum Platyhelminthes.  Southeast Asia, Japan, China, and Taiwan have a high rate of Cholangiocarcinoma related to infestation of this parasite.
Hugs,
Marion

11

(5 replies, posted in General Discussion)

jetcm......we have had plenty of reports of CCA lung metastases including that of Milena.  As Lainy has mentioned, the search function will reveal all - it a bit much to read, but allows for a great overview.
Often times the physician will not treat the metastases unless he/she may deem it necessary to intervene with surgery or radiation.
Hugs,
Marion

http://www.cancer.org/acs/groups/cid/do … 85-pdf.pdf

Leslie.....In addition to what Kris has mentioned, you would want to discuss your thought with the physician.

The below link allows for a comprehensive overview of clinical trials:
http://www.cancer.org/acs/groups/cid/do … 06-pdf.pdf

The clinical trial mentioned in Gavin's posting is to evaluate the efficacy of Photodynamic Therapy given at time of stent placement.  This would then eliminate an additional intervention via a radiology appointment.   
Hugs,
Marion

Kris.....I believe that this will move forward - only a question of time. 
Hugs,
Marion

hisprazr....What an uplifting posting - thanks so much.

Hugs,
Marion

Kris....I so much respect you for your decisions, dear Kris.  You are superwoman.
Hugs,
Marion

Agree, Kris.  But the more we know - the better off we are.  A large, clinical study is as close as we can get to receiving the best answer available to us.  And, that has not yet happened in the obesity connection.
Hugs,
Marion

18

(5 replies, posted in Introductions!)

Leticia....Each one of us understands your anxiety and can relate to it as well.  Your physicians is watching closely; there is a good chance that the following tests results are different from the first or, that the rise of the CEA antigen is related to something else other than the cancer.
A three months old Baby - how wonderful. Is it a boy or a girl - what name?
Hugs,
Marion

19

(1 replies, posted in Introductions!)

Leticia....(love that name) Kris and I have responded to one of your other posting.  We are here to help. Please continue to reach out to us.
Hugs
Marion

Judy....We have listed physicians on our Medical Advisory Committee, some are located in Southern California.  It won't hurt to consult with several experts:
Please peruse our listing:
http://www.cholangiocarcinoma.org/medic … ouncil.htm
I am hoping for others living in Southern California to come forward and share their thoughts as well.
Hugs,
Marion

21

(5 replies, posted in Introductions!)

Leticia.....I would like to follow Kris in welcoming you to our site.  In regards to your question of CEA tumor markers, this is what I have learned:
The Carcinoembryonic antigen (CEA) is raised in approximately 30% of patients with cholangiocarcinoma.  It can be related to biliary obstruction, other tumors, liver injury.  But, it is not definite.
The physician will take in account symptoms, scan reports and blood tests.  What is it that is to be repeated; the blood test or chemotherapy?
Hugs
Marion

Thought to add this to the discussion.  Take a look at the cost to the US patient/insurer of the newly approved Hep C drug . 

http://www.sfgate.com/health/article/Co … 398315.php

Hugs,
Marion

Thanks, Gavin.

Nancy....  What a wonderful day it was for all involved.  In this so precious time, you made something beautiful happen for Frank. 
Hugs
Marion

http://www.cancer.gov/cancertopics/cam/ … -about-CAM