Duke....the recorded webinar is accessible with this link:
http://cholangiocarcinoma.org/webinar-u … epository/
It is recorded and available for viewing at any time. 
The restaging (classification) is important in that clinical trials not only strategize the individual groups, but hopefully accrue large volume s of patients for further studies specific to their disease group.  This, in combination with each patient's particular molecular behavior will allow for a clearer picture and targeted treatments.  How quickly will this come about?  That I don't know however; research for this cancer has increased dramatically over the last few years and in the near future, I expect it to accelerate accordingly.  The greater the understanding of this disease, the closer we come to early detection for CCA.
Slide 32 - rate of survival for perihilar CCA - not sure what data has been used for the analyses.  But we must remember that it is retrospective, based on previous cases encompassing previous treatment options re-classified in three different disease presentations. 
Once universally accepted, the new classification will lead to further, current analyses.
Hugs,
Marion

2

(7 replies, posted in Introductions!)

Sam.....you might already know, but our website provides a running feed to clinicaltrials.gov.
Here is the link: http://cholangiocarcinoma.org/professio … al-trials/
Good luck and please stay in touch - we care.
Hugs,
Marion

Sara.....my heart is with you and your entire family and especially for the little guy for having lost his Mom at such an early age. 

Hugs and love,
Marion

4

(6 replies, posted in Members' Cafe)

Count me in on the above comments.  Sure feels good to just let it all out.
Hugs,
Marion

5

(2 replies, posted in Clinical Trials)

elvchance....we used it for my husband - not sure whether it worked or not, but I know that it did not harm him.
Marion

Marksis......I was not aware of CA Medicare carrying liver transplantations for CC patients. I only recall a Texas attorney reaching out to the foundation 7 years ago asking for support in fighting the State of Texas and the case was won.
Hugs,
Marion

7

(15 replies, posted in General Discussion)

Stacie (CCF President) is at Mayo  speaking with Nasra re: some of the issues encountered with the study application and kit distribution.  Know that it is being addressed and that we are in the process of remedying some of the problems you have come across.   
Hugs,
Marion

8

(61 replies, posted in Suggestions)

In my case, the problem is related to a horrible computer virus which has embedded itself in the registry and just about everything else.  It is a mess and I am about to go crazy which I think was the intent of the nasty individual developing this awful virus.
Yikes.
Hugs,
Marion

Kathy....Your favorite surgeon chaired (2012) the NCI Hep. Task Force of which I am one of two advocates.   He is an ongoing member of the cholangiocarcinoma  foundation medical advisory committee and yes, I last spoke (in person) with him at GI ASCO.  He is happy with his new position in Texas, loves his work and his patients.  Don't hesitate from reaching out to him. 
Love, love, love the way you break the bank, dear Kathy.
Hugs,
Marion

Rob....I believe it to be best to focus on you, an individual with this disease, your own path, your own disease presentation and your personal response to treatments.  Statistics are necessary in order to achieve generalized results, but it is focused on a target population not necessarily representing you.  It is for that reason that I shy away from paying too much attention to the outcome of a statistical analysis. 

Nine years ago when first I became involved in the NCI research advocacy for clinical trials for HCC and CCA, the overall consensus within the medical community was that CCA is comprised of different diseases.  It was suspected but was not backed up by medical findings.  This has changed in that we now have evidence that on a molecular level although similar, CCA behaves very differently in these three subgroups:  Intrahepatic, Distal, and Hilar (Klatskin.)   The re-classification of this cancer is of extreme importance for research, as it carries over to treatment for the patient population.   
Hugs,
Marion

11

(75 replies, posted in Introductions!)

Dianne.... so nice of you to chime in.  My daughter was diagnosed with Hodgkin's Lymphoma (yours is Non-Hodgkin's) and completed treatment a few months ago.  She is doing well.  What baffles me is the time it takes for diagnoses.  Her lymph nodes had been enlarged for quite some time and her white blood count continued to rise for several years prior to her diagnoses.   
Dianne, had you not mentioned enlarged lymph nodes way back as well? 
Anyway, good luck today and please stay in touch.
Hugs,
Marion

Pyderman......I hope for others to chime in on this as well. Constipation is a distressing side effect of opioid treatment and for that reason it is combined with laxatives.   
We have reports on subcutaneous methylnaltrexone for the use of extreme impaction and I recall the below clinical trial:
http://www.ncbi.nlm.nih.gov/pubmed/18440447
Personally, I believe that the oncologist and pain specialist should be able to address your Mom's issues and for your Mom to be more comfortable very soon . 
Hoping that by tomorrow the symptoms will have eased dramatically.
Hugs,
Marion

Ha, ha....Lainy....we always can count on a special pun from you.
Hugs,
Marion

Sara....know that we stand beside you, all the way.  A tidal wave of love is heading your way.
Hugs,
Marion

15

(61 replies, posted in Suggestions)

Wonderful to hear, Patricia.  Thanks for the feedback. 
Hugs,
Marion

https://au.news.yahoo.com/thewest/lates … mans-beat/

17

(15 replies, posted in General Discussion)

I would like to revive this important thread.  What are your experiences with receiving the kit, understanding the requirements, and how fast have you received responses to your request of wanting to participate?

Thanks a million,
Hugs,
Marion

You might want to take a look at the presentation:
What We Have Learned From The International Hepatobiliary Neoplasia Registry.
http://cholangiocarcinoma.org/webinar-u … epository/

You may either watch or consider downloading the power point presentation.

The new classifications: intrahepatic, distal, and hilar leads us to understand that CCA is not a single disease rather, that it is a combination of three separate diseases. 

On a molecular level we see many similarities but very distinct differences as well. 
This may help explain why some people respond well to a particular treatment whereas other patients benefit slightly or some do not benefit at all. 

Ultimately, we expect to see different treatment modalities focused on each disease group. 

Hugs,
Marion

19

(3 replies, posted in Chemotherapy)

moontje........5F-U-  Fluorouracil belongs to the class of chemotherapy drugs known as anti-metabolites. It interferes with cells making DNA and RNA, which stops the growth of cancer cells.  It has been used for many years and lately has gained some additional attention due to the Hepatic Pump, which directs the agents directly into the liver.
Gemzar -Gemcitabine Hydrochloride -  works in a similar way. 
Both drugs are used as a single agent or in combination with other agents. Using the "search" function will lead you to many postings re: these drugs.
I wonder whether any of your physicians have recommended molecular testing in order to identify pathway inhibitors which may be beneficial as well?
Additionally, have clinical trials been recommended not only in the Netherlands or Belgium, but in France or Italy as well?
Hugs,
Marion

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

22

(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

23

(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

24

(19 replies, posted in Introductions!)

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

25

(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