jtaylor.....this cancer can be very resistant to one treatment and response well to another.  Keeping everything crossed that you will receive a response real soon. 
Please keep us posted, we are in this with you.
Hugs,
Marion

Ha, ha, Duke.  We can always count on your comments providing a  good chuckle.
Hugs,
Marion

Had to look it up.  Studies for advanced tumor are recruiting in numerous centers.  Please know though that this is a Phase I study - Researchers test a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
https://clinicaltrials.gov/ct2/show/stu … ocs=Y#locn
Hugs,
Marion

4

(41 replies, posted in Members' Cafe)

It is with a heavy heart that I must share that our sweet Lynn has passed away.  She is never forgotten and forever embedded in our hearts.
Hugs and love,
Marion

Thanks for the feedback, dear Nancy.  Much of the medical community is supporting the use of the biliary card for CCA patients.  It potentially can save the lives of many.
Hugs,
Marion

Lainy.....other than Gem/Cis (ABC study) virtually all of the drugs used for Cholangiocarcinoma  are based on "off label" drug usage.  In fact, we don't have a clinically validated "second line" of treatment regimen for CC patients. 
Physicians decide the drug best applied with their patients.   They base the decision on the knowledge obtained in patient care and the studies (old and new) showing positive indication of response to various treatment. 
A new drug approved for another disease but showing good indications for CCA as well can then be applied to our patients.  This is the case with the above mentioned molecular inhibitor.
Hugs,
Marion

Thanks much, Julie.

Thanks much, CTWong.

Will be introduced to clinical use in early 2015.  This will significantly shorten the time for enrollment in clinical trials. 
http://www.scientificcomputing.com/news … cal-trials

10

(12 replies, posted in Members' Cafe)

Julie...so glad that things worked out so well and you now can consider yourself "portless."  A good time to say "good by" to this cancer. I am overjoyed.   
Julie, your description of the port removal is important for others to read hence; would you be so kind and re-post it in the "General Discussion" thread?

Thanks much,
Hugs,
Marion

ctwong81.....Congratulations and thanks for sharing this fantastic news with us.  Is your Mom experiencing any side effects?    Perhaps you could be so kind and repeat your  posting in the Clinical trials section:
http://www.cholangiocarcinoma.org/punbb … .php?id=14
We will ask Rick to add a sticky so that all information is contained to one thread only.  This will allow for an easier overview of your postings.
Thanks a million. 

Hugs,
Marion

12

(154 replies, posted in General Discussion)

Tom....Hang in there.  Ben may very well respond to the antibiotics at which time the bile leakage may be lessened as well.  Fingers and everything crossed on this end.
Hugs,
Marion

You are welcome, dear Julie.
Hugs,
Marion

This subject comes up often.  Tumor is considered stable and yet is determined active in a follow-up scan.  Stable tumor - what does it mean?

Imaging Response Criteria

•CR (complete response) = disappearance of all target lesions
•PR (partial response) = 30% decrease in the sum of the longest diameter of target lesions
•PD (progressive disease) = 20% increase in the sum of the longest diameter of target lesions
•SD (stable disease) = small changes that do not meet above criteria

http://imaging.cancer.gov/clinicaltrials/imaging

15

(2 replies, posted in General Discussion)

jl.....welcome.  Glad to hear of your Mom's recovery from surgery and wish for continued success.  Jl, EBV+ lymphoepithelioma-like intrahepatic chlolangiocarcinoma, had been mentioned only once, many years back and I recall reference to the Epstein-Barr virus.  Perhaps someone will come forward and pass on information relevant to your questions. 
Is your Mom receiving medications for the itching?
Hugs,
Marion

16

(18 replies, posted in General Discussion)

Nancy.....you can count on our thoughts and prayer to come Ron's way.  I am stunned to hear of the current developments seven years out from diagnoses, but hopeful that it can be conquered.
I am wondering, dear Nancy, had you consulted with an interventional radiologist as well?
Hugs,
Marion

http://www.news-medical.net/news/201409 … asite.aspx

Gros....a warm welcome from me as well.  Hoping for someone to come forward to share their current information with us, but in the meantime I thought to use the search function for older postings referring to Nano knife:
http://www.cholangiocarcinoma.org/punbb … =519949613
Try to stay positive and hopeful.  How is your Mum feeling? Tired? Nauseous? 
Hugs,
Marion

19

(1 replies, posted in Members' Cafe)

Great resource, Duke.  Wonder whether anyone visiting our site can contribute some comments on the above or has other helpful information to share with us? 
Hugs,
Marion

20

(3 replies, posted in General Discussion)

highstress.......I am not a physician and everything mentioned by me must be confirmed by a physicians, but I recall some postings re:  the relationship of rash and blockage of the bile ducts.  Some were prescribed Ursidol to increase bile flow, but again, this needs to be discussed with the physician.  Stage IV disease encompasses varied disease expressions, hence I would make sure to speak with the doctor.  Please keep us posted, we care.
Hugs,
Marion

Julie.....some day you will look back and wonder how you managed to make it through this difficult time .   For now life is on the upswing and time for renewal.  Based on the regrowth of hair, eyebrows, lashes you are well on the way.  Enjoy life, as all of us should.
Hugs,
Marion

Disease specific organizations such as ours must continue to push for increased research into this disease. 
Ultimately though it demands a collaborative effort involving patient advocacy groups such as the Cholangiocarcinoma Foundation, scientists studying rare diseases, Pharmaceutical Industry, Government overseeing and supporting medical research as well as regulations set by the Governmental institutions, i.e. the FDA. 
Rare diseases are particularly difficult in that investment by Pharma. is unlikely to compensate the millions it requires to bring a drug to the market.  Medicine is a business – it should not be so – but in reality it is just that.   

Hugs
Marion

Val.....my heart goes out to your family.  May the memories of your dear Dad overshadow the deep sorrow of his loss and may your heart begin to heal one day at a time.
Hugs and love,
Marion

24

(154 replies, posted in General Discussion)

Tom.....We have had some incredible stories related to the surgical re-routing of the biliary system.  Although (generally) not anticipated leakages occur with some and yet not other patients.   A surgeon once mentioned:  I will do the best possible  and await the patient's response to the surgery.  Guess, Ben is responding in his own way.
Please let us know the outcome and please, please consider attending the family wedding minus the guilty feeling.  You deserve a break too.
Hugs,
Marion

25

(11 replies, posted in Introductions!)

Alison....glad that everything went well and for your Dad to start treatment real soon.  Not sure whether anyone had mentioned a "port" for chemo infusion.  Most likely you already have read up on older postings re: Gem/Cis and side effects but hoping for others to share some current information with you as well.
A belated Happy Birthday to your little guy too.
Good luck to your Dad and please keep us posted. 
Hugs,
Marion