So many of us can relate:
http://well.blogs.nytimes.com/2015/01/2 … h&_r=1

2

(197 replies, posted in Hospitals)

Thanks much, Moose. 
Hugs,
Marion

http://boxford.wickedlocal.com/article/ … /150117753

4

(2 replies, posted in Grief Management)

Sammi......already you have been through so much, I just know that this last step you will manage as well.  Think of your little girls, how your Dad would want you to be strong for him and for his granddaughters and know that this day will be behind you as well.  Baby steps, dear Sammi and remember that our love and good wishes will surround you.
Hugs,
Marion

Reporting back (a bit late) from GI ASCO 2015.

Abstract:Tumor profiling for distinct molecular alterations.

Focused on IDH 1 and IDH 2 which are  metabolic enzymes found in several malignancies.  These enzymes help break down nutrients and generate the energy for cells.   However; once mutated, IDH creates molecules which interfere with the genetic profiling; cells don’t mature but rather they multiply rapidly ultimately leading to malignant tumors. 

Another study demonstrated that extrahepatic CCA had the highest rate of KRAS mutation whereas intrahpetic CC which showed evidence of the highest rate of IDH -1 mutations. 

HER2 mutations were higher in extrahepatic CCA than in intrahepatic CCA suggesting that HER2 targeted therapy may prove positive for this subgroup of  patients. 

It also is suggested that further studies may prove that intrahepatic CCA may identify additional molecular subgroups.   

With continued profiling studies, we will gain a better insight into the disease biology which then should lead to sensitivity identification for  distinct therapies. 

The below abstract on genomic profiling of biliary cancers showed responses to drugs on the market or drugs  under evaluation in clinical trials.
Note:  IHCCA (intrahepatic) EHCCA (extrahepatic) GBCA (gallbladder)

http://meetinglibrary.asco.org/content/139827-158

Hugs to all,
Marion

Not always does it take ten years for a drug to be approved and applied to patients.  The FDA has in place 4 distinct application processes for a drug showing promise in early testing.  In order to speed the process of application (which can be lengthy - perhaps 1 year or more) drug companies must fit specific criteria.  But, the data must clearly show advantages over a drug already in use or potentially could be life saving.  The rules and regulations are stringently scrutinized.   I believe that in the current state, we can expect drugs to come to market within 5 to 6 years (for our cancer.)  There have been instances where a drug showed such overwhelming positive response that a phase I speeds to a phase II clinical trial and if it continues to show similar results, it can be brought to the patient population significantly faster.  But, as a whole, we must count on 5 to 6 years (at least) as the stages of clinical trial take up the majority of time.
Here is a link explaining the 4 different applications drug companies must file with the FDA:
http://www.fda.gov/ForPatients/Approval … efault.htm
Hugs
Marion

Have you taken a look at our currently updated website?  What do you think?  What would you like to see differently, what should be added?  Your voice counts and we always are ready to learn from you.

http://cholangiocarcinoma.org/

Windi....you may also take a closer look at information we provide.
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Newly diagnosed:
http://cholangiocarcinoma.org/the-disea … diagnosed/

Most of all, dear Windi, don't give up on hope.  Taylor's young age is very much in his favor; his resilience is built in.
Hugs,
Marion

Windi.....I am so sorry to hear that UCLA has released him due to inability to pay.   Taylor may very well qualify for Medical or Medicare and as far as I know UC Irvine Health has charity care policies as well.  Please share with us the outcome of your visit with the oncologist. 
This is supposed to be a disease of the elderly and yet we find an increasing number of young people diagnosed.   Only last year, Christopher Wilkes, Los Angeles, a 12 year old boy, had this cancer.  It is heartbreaking.
Windi, I have e-mailed you.  Please check your inbox.
Hugs,
Marion

http://cholangiocarcinoma.org/fundraise … emembered/

11

(4 replies, posted in Websites)

Darla...you have been with us for so many years, faithfully work behind the scene and contribute immensely to not only the foundation, but many, many others as well.  Not for one single moment should you have any regrets about anything, ever.
Hugs and love,
Marion

12

(4 replies, posted in Websites)

Most of you might be aware of this site, but thought to mention it again:
https://www.facebook.com/pages/Vietnam- … 22?fref=ts

This covers all diseases, not just cancer:  Session is a bit less than one hour
http://www.partneringforcures.org/progr … /view/5300

14

(9 replies, posted in Introductions!)

Helen...thanks for joining us and a big thank you to Margaret for leading your our way. First and foremost, congratulations on a successful surgery.  Stage II disease is about as favorable as  can be.  Add to it the negative margins and I assume a good recovery all leads me to believe that things have been lining up for you well.   I understand your reluctance of now following up with adjuvant therapy with one of the most prescribed chemotherapy drugs for this cancer.  In fact, our search function (top bracket) will reveal hundreds of postings regarding this oral drug.  Know that the possible side effects can be treated and there always is a chance that you won't be bothered with much at all.  As the others have mentioned, you have the right to stop treatments at any time. 
I wish you luck with your decision and please continue to stay with us.  We are in this together.
Hugs,
Marion

15

(7 replies, posted in General Discussion)

Kris....so glad to hear the latest news.  So, we can all relax a bit and focus on you and your back issues.  Hoping for the prednisone to kick in quickly and we can look at better days ahead.
Hugs,
Marion

What a great beginning of this thread and getting better as it goes.  Absolutely thrilling, Duke, to read your message. 
Hugs,
Marion

17

(5 replies, posted in Members' Cafe)

Nancy.....thanks for reaching out to the individual.  Princess Margaret, Toronto  treats a high volume of CCA patients and therefore I believe that she is in good hands.  They are very familiar with our foundation; it is surprising to know that she is not aware of us.  I hope you can make the connection, Nancy. 
Hugs,
Marion

18

(10 replies, posted in Introductions!)

Dot.....no apologies needed, ever.  Hang in there.  Good luck on the radioembolization - it has worked great for many - no reason to believe for your Mom not to be equally as fortunate.  Try to take it one day at a time.  No one can truly predict the future with certainty and that uncertainty can work in our favor.
Hugs,
Marion

19

(7 replies, posted in General Discussion)

Kris......please try to not think the worst.  As you know too well the elevated enzymes could be temporarily elevated.  We have seen it many times unrelated to the cancer, but understandably the worry  is always the same.  I am staying optimistic and focus my thoughts on your healing from the back injury.  You so much need a break from it all.
Hugs,
Marion

20

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

Nancy.....it always is wonderful to see you on this site.  Thank you for sharing this fantastic news with the rest of the world.  Congratulations, dear Nancy, you are an inspiration to us all.
Hugs,
Marion

21

(21 replies, posted in General Discussion)

Sandie.....I agree with the others; nothing beats a great trip away from it all.  Enjoy.
Hugs,
Marion

http://www.sciencedaily.com/releases/20 … 142658.htm

Sally...Great news.  Tumor necrosis often follows radiation treatment. It takes some time to identify, as everyone mentioned, time to relax and enjoy life.
Hugs,
Marion

Sammi.....that is what grief is all about - they say it is the price we pay for love.  There are no quick fixes - we have to go through it.  You are doing everything right, dear Sammi, you give to your children and you mourn the loss of your dear Dad.   Each of us grieve differently; there is no time line, but the intervals of sorrow will lengthen - with time.  You too will get through it...lean on us...and anyone able to hear you out. 
My heart is with you,
Hugs and love
Marion

http://www.fda.gov/NewsEvents/Newsroom/ … ovdelivery