Julie....tough news, but don’t let it take over your mind. I know it’s not easy, but knowing you  the fighting instinct will set in soon.   I would request molecular testing from an independent lab such as Foundation One.  Also, like the idea of consulting with the surgeon something Percy believed in.  Perhaps ablation or surgery presents to be an option with additional immunotherapy.  As mentioned by you, Mayo is not the only place for treatment, there is the NCI MATCH trial as well as the TAPUR study and other trials you may qualify for.

One step at a time, dear Julie.

Thinking of you and sending tons of hugs your way,

Marion

2

(6 replies, posted in Members' Cafe)

Thank you and love to all.

Marion

Thanks, dear Rick and Gavin.  I was trying to keep this under wrap, but Social Media has changed everything. 
Thanks again,
Love you guys,
Hugs,
Marion

Cathy.....I am in touch with a patient, post LT recurrence.  I wonder whether you are up to connecting with him, dear Cathy.
P.S. I sent you an e-mail.
Hugs
Marion

5

(6 replies, posted in Members' Cafe)

Thank you, from the bottom of my heart. 

Love
Marion

6

(7 replies, posted in Members' Cafe)

Newjersey......I don't have the answer to your question, but based on previous postings, I assume things will move forward real soon.
Hugs,
Marion

7

(7 replies, posted in Members' Cafe)

Newhersey.....cholangiocarcinoma is one of the cancers known for blood clots. It first was described by Armand Trousseau, who  passed away from pancreatic cancer.  You can read up here:
http://www.dermnetnz.org/systemic/trousseau.html
We have several reports on this site related to blood clots. 
Perhaps others can chime in on the filter for prevention of future clogging, but I have a friend (no cancer) who had the procedure done as well.

Hugs,
Marion

http://cholangiocarcinoma.org/campaign- … cure-2016/

9

(3 replies, posted in Members' Cafe)

Scott....happy to see you checking in with us, but even happier to know that you are doing great while enjoying your life.  Your words of wisdom are well taken, dear Scott.
Know that we think of you as well and are happy for you.
Hugs,
Marion

Patty.....fantastic, glorious, incredibly and welcome news, skipping right along with you.  Patty, would you mind re-posting this in the NCI MATCH thread? 
http://www.cholangiocarcinoma.org/punbb … 88#p104388

Thanks a million,

Hugs,
Marion

https://www.crowdrise.com/teamccf-chicagomarathon

You go, Chicago Team

12

(119 replies, posted in Hospitals)

pinklady....thank you, thank you.

Hugs,
Marion

Shellie.....I don't recall you mentioning, but molecular testing had to show a tumor with a FGFR genetic alteration.
Patty's study: A Phase II, Single Arm Study of BGJ398 in patients with advanced cholangiocarcinoma is not open for accrual. In fact, it has discontinued.  Current patients on this study will complete the trial.
https://clinicaltrials.gov/show/NCT02150967

Novartis is conducting another study for solid tumors (not specifically advanced cholangiocarcinoma) but with  same FGFR alteration:
https://clinicaltrials.gov/ct2/show/NCT02160041

It is recruiting in a few States only:

Horizon Oncology Research, Inc.   
Lafayette, Indiana, United States, 47905
Contact    765-446-5777     
Principal Investigator: Wael Harb         

United States, New Mexico
New Mexico Cancer Care Alliance Oncology Dept    Recruiting
Albuquerque, New Mexico, United States, 87106
Contact    505-925-0357     
Principal Investigator: Melanie Royce     

Carolina Oncology Specialists, PC    Recruiting
Hickory, North Carolina, United States, 28602
Contact    828-324-9550     
Principal Investigator: Richard Orlowski 

Northwest Cancer Specialists Northwest Cancer   
Portland, Oregon, United States, 97210
Contact    360-449-6522     
Principal Investigator: David A. Smith   

United States, Washington
Providence Regional Cancer Partnership Providence Reg. Cancer (2)   
Everett, Washington, United States, 98201
Contact    425-297-5500     
Principal Investigator: Jason Lukas       

MultiCare Health System Institute for Research & Innovation MultiCare - Gig Harbor    Recruiting
Tacoma, Washington, United States, 98405
Contact    253-530-8060     
Principal Investigator: John A. Keech       

Hugs,
Marion

bpbeinchlich....thanks for pointing out.  Hope this works.
http://www.fda.gov/ForPatients/Other/Ex … 041768.htm

Hugs,
Marion

15

(84 replies, posted in Clinical Trials)

bpbeinlich.....thanks for sharing this good news with us.
Hugs,
Marion

16

(12 replies, posted in Introductions!)

Jan......you deserve a break and you received it.  Hang in there, we are behind you all the way.
Hugs,
Marion

17

(12 replies, posted in Introductions!)

Jan......any explanation  regarding her passing out?  Hoping and wishing for everything to take an upswing following tomorrow's procedure.
Hugs
Marion

18

(3 replies, posted in New Developments)

http://blogs.fda.gov/fdavoice/index.php … ovdelivery

Our cancer is finally gaining the attention it deserves. Research is increasing and we are witnessing expedited approvals. Some days are better than others and this is a great one.

Hugs to us all
Marion

Dear Anne.....no, this is the first I heard of it.   Thanks for enclosing the link.  I must admit, reading up on these type of discoveries makes my heart jump a bit.  We desperately need research into this cancer and it is happening. 
Hugs,
Marion

20

(17 replies, posted in General Discussion)

AussieJan.....got it.  Then I transfer over the wishes for a  safe trip to all arriving from the UK.  What a lovely idea it is to have everyone come together for this special day. When my husband was ill with this cancer, I tried to keep our lives as normal as possible, including celebrating Holidays and Birthdays.  It was good for him and good for us as well.
Enjoy.
Hugs,
Marion

21

(5 replies, posted in Clinical Trials)

Treatment Strategies for Cholangiocarcinoma - Mayo Clinic

https://www.youtube.com/watch?v=egNAKGIyDz8

22

(5 replies, posted in Clinical Trials)

The Cholangiocarcinoma Foundation 2016 Conference

https://www.youtube.com/watch?v=fe-kD2VQ2Ac

Please continue to populate this important thread.

Thanks a bunch,

Hugs
Marion

24

(119 replies, posted in Hospitals)

Thought to revise this thread once more.  The information you provide is of great benefit to all.

A big thank you to our international members.

Hugs,

Marion

25

(17 replies, posted in General Discussion)

AussieJan....have a safe and enjoyable family holiday.  Nothing beat togetherness with the one's we love.
  Things to remember:  stents can clog and cause an infection, which can be serious.  Please take a look at the information and perhaps download the biliary stent card: http://cholangiocarcinoma.org/biliary-e … tion-card/

It's best to take your mom's temperature, daily. 

Enjoy, enjoy and be safe.

Hugs,

Marion