1

(19 replies, posted in Introductions!)

Sherri......a tidal wave of good wishes are heading your way.  Stay strong and hold on to your positive attitude.  We like to say that this cancer throws us curveballs, but resilience pays off.
Hugs,
Marion

DMiller...I agree with Lainy in that ultimately the physician needs to inform you about this disease. 
Please take a look at the below link.  You may find the answer you are looking for:
http://www.cancerresearchuk.org/about-c … -come-back

Please, let's continue to discuss.
Hugs,
Marion

3

(176 replies, posted in Introductions!)

Matt....this is what I have learned: you started with a baseline reading of the CA 19-9 - the drop accounts for tumor response to treatment. 
Some people lack a specific protein and for those the CA 19-9 is non-existent.  That does not appear the case with you.  Congratulations on the fantastic results.
Hugs,
Marion

Daisy....try this link:
http://www.cholangiocarcinoma.org/punbb … 582#p84582

In order to follow Percy's postings take the following steps:
click on his signature:  PCL1029
window opens:
http://www.cholangiocarcinoma.org/punbb … hp?id=5579
click on below:
View all PCL1029's posts
View all PCL1029's topics

Hope this helps.
Hugs,
Marion

This subject comes up often - pain following  stent placement procedure.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151411/

Here we go:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4360553/

7

(176 replies, posted in Introductions!)

Matt.....perfect downward spiral - everything we wish for.
Hugs,
Marion

Thanks, Matt, for the  excellent advice.

Julie....excellent question I would love to hear the answer to.   
Hugs,
Marion

10

(2 replies, posted in Hospitals)

Balwas.....pain after stent insertion is not too uncommon; all the more reason to stay in close contact with the physician.  Based on the postings on this site, I found one of the most cited issues is pancreatitis due to the caliber of the stent.  Communication with the physician is of utmost importance.

Hugs,
Marion

11

(14 replies, posted in General Discussion)

Additionally, this link provides a good overview:
http://www.cancer.net/cancer-types/bile … ustrations
Hugs,
Marion

Onlyone......although one of the Biliary cancers, gallbladder cancer is different than that of bile duct (cholangiocarcinoma) hence it is unlikely for you to find gall bladder cancer specifics on this site.  Treatments can be very similar though.  The below link may offer some additional information:
http://www.cancer.org/cancer/gallbladdercancer/
I hope this helps.
Hugs,
Marion

13

(15 replies, posted in Members' Cafe)

Duke.....good luck, fingers and everything crossed. Signature trials are new and have evolved due to molecular testing. .  Here an investigational cancer therapy is specifically geared to genetic alterations found in a patient's tumor. 
Hugs,
Marion

Pyderman....I would enjoy the great news and consider myself fortunate to have such a fantastic response to the treatment.  Congratulations. Enjoy life.
Hugs,
Marion

http://healthnews.uc.edu/news/?/25867/

Daisy.....we have a running feed on our site to the clinicaltrials.gov website.  Please see below:
http://cholangiocarcinoma.org/professio … al-trials/
Your Mom's treating physician should be involved. 
Hugs,
Marion

17

(6 replies, posted in Hospitals)

Balwas.....the search function revealed numerous postings re: Alberta, Canada.  Some of it will pertain to your questions others may not.  But, I believe it is worth taking a look.
http://www.cholangiocarcinoma.org/punbb … 1425926592
Good luck and please keep us posted.  We care.
Hugs,
Marion

18

(3 replies, posted in Chemotherapy)

Jim....I am hoping for others to chime in on your questions.  If you don't receive any answers then please don't hesitate from reposting on this site. 
You might also wish to consider a second professional opinions from physicians/centers very familiar with this disease.   It has become standard of care for all cancer patients. 
Good luck and please keep us posted.
 
Hugs,
Marion

You may watch it right here:
https://www.youtube.com/channel/UCBa2G8 … 5kIuXgQi1w

Louie.....I hope for others to chime in on the not previously mentioned procedure for Portal Vein Embolization.
For those "lurking" on our site and hesitant of registering please sign up.  Your comments are of utmost value to all.
Hugs,
Marion

21

(4 replies, posted in Grief Management)

Mary....I can only echo what the others have said:  those words speak for everything we think and feel.  Thanks so much for sharing.
Hugs,
Marion

dhometexas.......I have learned that laparotomy (exploratory procedure) is the first step of a planned biliary surgery.   Time for this  "first step" varies, but rarely it appears to last longer than a few hours.
You might also want to ask about the "estimated" time for the biliary surgery.
Hugs,
Marion

This study’s aim was to identify the outcome  of Distal Cholangiocarcinoma patients resected between the years 1991 to 2010.  It includes those with no cancerous tumor tissue (post resection) as well as those with microscopically identifiable tumor cells, RO and R1, respectively, after surgery.
Of 122 patients, 44 patients did not have disease recurrence.
Of the 80 patients with recurrence, 63.1 % lived one year and 36.4 % lived three years.
Based on this particular study, patients with R1 (microscopic cells visible after surgery) and those with RO (no identifiable malignant cells i.e. cells very different from normal cells) as well as those with lymph node involvement should be watched closely and treated with adjuvant therapy. 
We must note that this is one retrospective study of a population group in Korea only.  It also did not identify the type of adjuvant therapy to be applied.
Hugs,
Marion

Thank you, thank you, thank you.

livermass88....I am glad you brought this up.  The  subject of referring patients to UNOS was addressed in my presentation at our 2nd annual cholangiocarcinoma foundation conference.  If indeed we see additional, select hilar CCA patients accepted in the program, then it would be of great benefit to work out the kinks beforehand. 
I also wonder whether you would be so kind and repeat your postings in the below section:
Surgery, Resection & Transplant Treatment Options
http://www.cholangiocarcinoma.org/punbb … .php?id=41

Thanks for considering,
Hugs,
Marion