You have come a long way, dear Orlysud, from utter despair to managing life again.  You have made your sweet Mom so proud of you.  And, yes, you have helped many others by baring your soul and writing openly about it.  It takes a strong person to do what you have been able to accomplish.  Thank you.
I wish for your heart to continue to heal - one day at a time.
Hugs,
Marion

SweetGreen....sorry, this is the first I have heard of it too. 
Hugs
Marion

Kris....I wonder about it too.  Peripheral Neuropathy is accepted, but I wonder whether she was cautious about putting you through that again.  When in doubt, ask.  See if you receive a response.
Hugs,
Marion

4

(10 replies, posted in General Discussion)

Regina....we will be able to interpret Percy's reports, but it may take a few days.  Percy and I are preparing for the upcoming ASCO meeting in Chicago, but we will try to find some time to go through the Abstracts soon thereafter.

In regards to the tumor markers (CA 19-9) 10% of the Caucasian population lack a specific blood protein hence, they will not show a rise in the marker. It is nothing to worry about, as the Lewis Antigen mainly is used to track response to treatment.  In itself, not much value is given to it.

Patients like you are watched for symptoms and results of scans and blood tests in order to track response to treatments. 
Hugs,
Marion

Serina.....please don't worry - we are here to help you.   You can read up on Kris's postings by clicking on the below links:

http://clinicaltrials.gov/show/NCT01285037
and here is a bit more about the drug:

http://www.medkoo.com/Anticancer-trials/LY2801653.htm

You may also go to her picture and signature box:kris00j

click on her name

it will lead you to a page



Contact information
Email: Send forum email



Posts and topics
View all kris00j's posts

click on: view all Kris00j posts
and it will lead you to all of Kris's threads.

Don't be afraid to ask for help.  It takes some time getting used to our website. 
Good luck,
Hugs
Marion

6

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

Rain....based on the lowered tumor markers, I expect good news coming your way and for you to enjoy and safe trip to Italy.  The little ones will be thrilled to have their Mommy back. 
Please, keep us posted.
Hugs,
Marion

7

(56 replies, posted in General Discussion)

Pam posted again
http://www.loveandhopeforlauren.blogspot.com/

Good description, Willow.  Do you remember (several years back) when it rained for the entire month of January and all but two days in February?  TV stations enlisted the help of Psychologists to speak to the super depressed population of Northern California. Some of their comments:  "Sorry, but we can't do anything about the weather" and finally "you are spoiled, people". I considered moving South, but then it was raining there also.  Would have had to go south of Mexico to escape the seemingly never ending rain.  Besides, my husband was not too keen on the idea of moving his law praxis to South America.
So, yes, Willow is describing it perfectly.  We should not complain, but it is hard not to when warm weather is on my mind.
Hugs,
Marion

Hi Regina, our Kris is in a phase I trial and Melinda posted on her trial:
http://www.cholangiocarcinoma.org/punbb … 987#p63987

Both are intrahepatic patients.
Hugs,
Marion

According to some conservative estimates, there are over 250 cancer-related Patient Advocacy organizations in operation on a national or regional level.  These groups have thousands of members and advocates working to make a difference in the lives of millions.

Coalition of Cancer Cooperative Group
http://www.cancertrialshelp.org/patient … tAppMode=0

Yes, Julia,  Northern California is generally warmer than what we are experiencing presently however; it pales to what is going on in Europe.  This is a strange weather pattern I believe for most countries.
Hugs,
Marion

12

(3 replies, posted in Introductions!)

jshu43....welcome to our site.  I am not a physician hence, everything I say derives from a layman's perspective.  Like you, I believe that a cancerous stricture would have been accompanied by other symptoms.  I am wondering: was the narrowed bile duct tissue biopsied?  I would also be interested in finding out whether scarring occurred causing the current, repeated narrowing of the duct. What are your blood test results?
Hugs,
Marion

13

(56 replies, posted in General Discussion)

Thanks Jen, for pulling this up and placing the link.  Like you, I feel that things are a bit more positive.   What a relief this is?
Hugs,
Marion

14

(8 replies, posted in In Remembrance)

It is with great sadness that I read of your Mom's passing to this horrible cancer.  My heart goes out to you and your family. Words cannot express the sorrow I feel for you and words may not comfort you, but know the presence of her family, must have given your Mom the comfort she deserved.  Your heart is broken and her loss causes pain beyond comprehension, but know that grieving allows you to shed tears of sorrow and simultaneously allows your heart to heal - one day at a time.
A big hug and love to you,
Marion

Randi....I have only been on the caregiver side, but I must agree that it is not easy on those standing by a loved one through any type of procedure.  It is nice to read an objective observation from someone on both sides of the issue. 
Wishing for your husband to heal quickly and for you both enjoy the upcoming long weekend.
Hugs,
Marion

Thanks much, Percy.  I will try to decipher the information later on today.  You give wonderful, scientific reports. So glad that you enjoyed Digestive Week and for everything it had to offer.  Have a safe trip back and rest up before   ASCO, Chicago.
Thanks a bunch,
Marion

17

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

o.k., I will quit worrying (I think) as you are on top of the situation.  The reduced CA 19-9 expression certainly is something to be thrilled about. You go, Kris.
Hugs,
Marion

18

(16 replies, posted in Members' Cafe)

oh, Kris.....my tissues are soaked with joy for you.  What a touching an moving speech you gave and how your determination and kindness showed through so strongly.  I am so in awe of you.
Hugs
Marion

19

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

Kris...the clinical trial you are participating in - a phase I study -
http://clinicaltrials.gov/show/NCT01285037
is to determine the toxicity level and being that you are in Group B to also determine the effect it has on your tumor.
Although, a phase 0 study has been conducted on about 20 people or less, this trial is to pinpoint side effects and at which doses such occurs. Kris, don't hesitate from speaking with the Primary Investigator regarding any questions you may have.
Hugs to you,
Marion

cbenner......welcome to our site.  The fact that you are feeling well is a good sign especially since you have already undergone several treatments.  As you may know, Thailand has the highest occurrence of this disease, globally and quite a bit of research is done in that country.  In fact, the Cholangiocarcinoma Foundation supported research by funding a grant to Dr. Surbpong Tanasanvimon:
http://www.cholangiocarcinoma.org/media.htm
Based on a conversation I had with him and given the project results together with previous data, he believes that liver-fluke associated cholangiocarcinoma in Thailand is different from cholangiocarcinoma in USA in term of their biology.
Treatment options however; (I believe) don't differ much from what is being offered in other countries.  Having said that, dear cbenner, obtaining a second, professional opinion is a good idea. 
It may very well be possible to forward your medical information to a physician/s "very" familiar with this cancer without physically being present. 
Please, keep us posted.
Hugs,
Marion

Great job, Jason.   
Hugs,
Marion

Oh my.  My sister is reporting poor weather in Germany also.  In fact, I had been there in Fall of last year and returned in Spring of this year and it seems that Winter still has not left. 
The weather in Northern California is quite different from all the previous years too - not nearly as warm with much wind.  Not too great for someone suffering from allergies (me).
Sure hope that Summer will pop in real soon in your region.
Hugs,
Marion

23

(8 replies, posted in Introductions!)

I much agree with what Gavin has said.  Specialists disagree with their approaches to treatment and it is important to gather as much information as possible from various physicians.  Don't be afraid to ask each as to how many of these surgeries he/she has performed.
I also agree with Gavin that ultimately your Dad needs to be able to make the decision as to how he wants to proceed.  He does however, needs to be able to make an educated decision and that only can happen with gathering of information.
We have to remember though, that patients can become overwhelmed hence, it might be best for you and your siblings to do much of the legwork and then present your findings to your Dad in a short and easy to understand manner. You might also want to include your Dad's primary care physician.  (Does he have one?) If indeed this doctor is someone your Dad trusts, then he/she may be able to help him understand better.
I am hoping for others to chime in also and share some of their thoughts.
Please stay in touch.  We care.
Hugs,
Marion

Pat....one would want to hope that he had found this site or that his loved ones had read it.  I can't imagine facing this cancer without the input of the great people on the discussion board. 
Hugs,
Marion

Rose....Prevalence of this cancer is increasing.  It is believed that this disease encompasses 3% to 4% of all gastrointestinal cancers.  Speculations are all over the place ranging from better detection methods to increased awareness.  I would also like to believe that the people on this board (and the lurkers) as well as the Cholangiocarcinoma Foundation play a role also.
Hugs,
Marion