1

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

Kathy....this is the most fantastic news to share with us.  Have you shared it with your favorite surgeon yet?
How are the girls?  They must be nearly grown up by now? 
Hugs
Marion

John......fantastic response - all the way around. 
Hugs,
Marion

3

(15 replies, posted in Thought for the Day)

Thanks so much, dear Emad and Kris.   It was a special day as it should be for everyone. 
Hugs,
Marion

4

(42 replies, posted in Introductions!)

Olga.... As Lainy suggested, you will want to make sure to have important phone numbers on hand.  Not sure whether Norbert has a stent, but if so, please make sure to carry along the biliary emergency card as well. 
http://cholangiocarcinoma.org/biliary-e … tion-card/
Have fun and enjoy your special time together.
Hugs,
Marion

5

(19 replies, posted in Introductions!)

jetcm....good luck with the upcoming repeat biopsy procedure.  Please keep us posted.
Hugs,
Marion

6

(19 replies, posted in Introductions!)

In the United States new drugs are tested in clinical trials (research studies) before they are approved by the US Food and Drug Administration (FDA) for use in the general public. The clinical trials are done to show that the drug works to treat a certain medical condition, the way it is expected to work, and is safe when used as directed.
Cancer drugs are often used off-label.  In general, once the FDA approves a drug, licensed doctors can use it for any purpose they consider medically appropriate.  They may use it  for a different disease or medical condition, in a different way or in a different dose than approved in the label. 
The biggest problem is getting insurance plans to pay (reimburse) for off-label drug use. Many insurance companies will not pay for an expensive drug that’s used in a way that’s not listed in the approved drug label. They do this on the grounds that its use is “experimental” or “investigational. 
Hugs,
Marion

7

(15 replies, posted in Thought for the Day)

Thanks, dear Gavin. 
Hugs
Marion

8

(15 replies, posted in Thought for the Day)

Ha, ha, Willow, bilingual, but not in Spanish.  Thanks for the Birthday wishes.
Hugs,
Marion

9

(15 replies, posted in Thought for the Day)

A big thank you to all of you.  Rarely do visit Facebook, but think I better do so today.
Again, a  big huge thanks to all you wonderful people.
Hugs,
Marion

10

(15 replies, posted in Thought for the Day)

Thanks, dear Lainy.  There only is one you - so happy to be in your life.
Hugs
Marion

11

(15 replies, posted in Thought for the Day)

Thanks, Rick, for your sweet and much appreciated comments.  I am proud to be part of this wonderful organization.  It was built on the tireless volunteer work of a few dedicated individuals (hint, hint) and has now grown into most recognized foundation for this cancer.   

Hugs,
Marion

http://proteomics.cancer.gov/newsevents … arfeatures

13

(56 replies, posted in Suggestions)

Guess it is not my computer connection - reached out to Rick, awaiting an answer.

Sharon.....Based on the thousands of postings on this site,  patients staged I or stage II faired very well post resection.  Good reason to stay positive.  Although the majority of physicians recommend some type of adjuvant therapy, at this point we don't have any clinical data supporting the benefit of such.  We are awaiting the results of the BILCAP trial (UK) xeloda vs. no Xeloda post resection, which should be released within the next few weeks.
Good luck with your decision.
Hugs,
Marion

15

(2 replies, posted in Thought for the Day)

Beautiful, Julie.  Thanks for sharing.
Hugs,
Marion

clue in mice - hopefully transfers over to cancer patients

http://www.eurekalert.org/pub_releases/ … 071014.php

17

(1 replies, posted in Members' Cafe)

Nicely stated, dear Julie, and so very true.   Amazing, here you are struggling with your very own treatments and yet you continue to advocate for your loved ones as well.   Kudos to you and best wishes to your mother in-law.
Hugs,
Marion

18

(3 replies, posted in Pain Management)

jtaylor......Kudos to the State of Delaware for granting patients the opportunity to receive medical marijuana.  Although a big proponent for the use of marijuana for cancer patients I am not able to answer the questions posed by you.  But I hope for others to come forward and share their experiences with us. 
Hugs,
Marion

Open for enrollment:

University of Texas/MD Anderson Cancer Center Onc. Dept.
Houston, Texas, US
Contact: Samia Aziz  713-563-7757
Prinicipal Investigator:  Dr. Milind Javle

A Phase II, Single Arm Study of BGJ398 in Patients with advanced Cholangiocarcinoma

http://clinicaltrials.gov/show/NCT02150967
Molecularly targeted therapy for patients with progressive and/ or metastasized cholangiocarcinoma.

Phase II:  drug given to a larger group of people to see if it is effective and to further evaluate its safety.

Single Arm:  everyone enrolled receives the same experimental therapy

Oral Drug BGJ398:  taken by mouth

Open Label: both the health providers and the patients are aware of the drug or treatment being given.

Required tumor sample must present with FGFR2 gene fusions/translocations or other FGFR molecular genetic alterations.

Patients must have progressed or not responded to at least one chemotherapy treatment with gemcitabine with or without cisplatin.

MD Anderson has launched and is ready for accrual. Other institutions will follow soon.  A patient friendly explanation of this trial will be on the website within the next few days. 
Hugs,
Marion

21

(19 replies, posted in Members' Cafe)

Kris......If ever one wants to meet a star or stars then one should visit this site; it could light up the sky. 
Hugs to all of you,
Marion

I have e-mailed Makua.  Hope she received it.

Duke...all forums work the same...information is public.  Personally, I think we are way beyond doomsday when it comes to protecting our privacy, but please read below disclaimer:

Discussion Board Login Information and Disclaimer
If you elect to post comments on any of the public discussion boards provided on the Cholangiocarcinoma Foundation website you will be required to select a username and provide your email address. Your username will be public, which means it is available to everyone and will be displayed in search results on cholangiocarcinoma.com and on external search engines. Please select your username carefully. Your email address and all other personal information will remain private, unless you post it on the public discussion board area of the website.

Hugs,
Marion

Sprinter....cryotherapy has proven to be rather successful for many with bone metastases.  I feel hopeful that you too will benefit from the procedure.  And, yes, vigilance does pay off.
Good luck and please keep us posted.
Hugs,
Marion

PERCUTANEOUS BIOPSIES AND/OR BIOPSIES PERFORMED AT THE TIME OF ENDOSCOPIC ULTRASOUND ARE DISCOURAGED. 

The American Association for the Study of Liver disease Guidelines recommends that potential transplant candidates should be expeditiously referred to centers that have established protocols for oncologic assessment and treatment approved by UNOS. 
AASLD Recommendations: 
Patients diagnosed with early-stage cholangiocarcinoma and deemed unresectable due to parenchymal liver disease or anatomic location may be considered for LT in combination with neoadjuvant chemoradiation

AASLD Practice Guidelines:
http://www.aasld.org/practiceguidelines … p26972.pdf