Randi....have you tried: hold down "ctrl" and hit +?

2

(12 replies, posted in General Discussion)

Lorna....where is your oncologist?  With Sloan Kettering?

Michellle....I would like to follow the others and welcome you to our site.  In addition to the wonderful advice you have received and will continue to receive from our members, you may also want to take a look at our home page.  Here are some links :
For the newly diagnosed:
http://cholangiocarcinoma.org/the-disea … diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/

As the others have mentioned please don't hesitate from reaching out to us.  We are in this together.
Hugs,
Marion

4

(12 replies, posted in General Discussion)

Lorna.......hmmmm, not sure I like the explanation if indeed the tumor burden has increased as mentioned.  Take a look:
http://chemocare.com/chemotherapy/what- … EbMxE10xjo
Hugs,
Marion

You are so very welcome.
Hugs,
Marion

Until others have a chance to respond to your question I thought to pull up some previous discussions pertaining to Irinotecan.
http://www.cholangiocarcinoma.org/punbb … d=91383178
Hang in there, a tidal wave of good wishes are heading your way. 
Hugs,
Marion

7

(12 replies, posted in General Discussion)

Lorna.......from my perspective and if the physician does not have a plausible answer to your question,  I would question the continuous use of Folfox. 
So sorry, Lorna and Matt, but there are other treatments available.  Also, had molecular/genetic  testing been done?
Hugs,
Marion

Just a reminder:  Tune in
Webinar: Using Patients’ Own Immune System to Knock-out Cancer: Adoptive Cell Therapy

9

(57 replies, posted in Members' Cafe)

Stella and her daughter Barbara attended the Memorial Service for Percy and these are the words spoken on behalf of us all.   Thank you for doing so, dear Stella.

"My name is Stella and I am here to speak on behalf of the Board of Directors of the Cholangiocarcinoma Foundation and the hundreds of patients, caregivers and others who were privileged to have known Percy. Some of us were fortunate to know him in person; others build a relationship by means of discussion board or personal interaction with private e-mail. No matter their language, their country or personal believe, Percy build bridges with the entire global Cholangiocarcinoma community consisting of patients, caregivers, researchers and physicians alike.
His professional background coupled with a great sense of curiosity and willingness to learn provided the perfect setting for Percy’s attendance of numerous scientific and medical conferences. His ability to understand the underlying molecular behavior inherent to the disease as well as his interpretation of scientific information provided us with information otherwise not obtainable. His postings are archived on our website and accessible for present and future use.
While fighting his own battle, Percy never wavered from his commitment to help others so that they too can be empowered to make educated decisions for their own healthcare needs. He was kind and loving with the patients, but firm in his personal convictions of how he was handling his disease.
The countless hours he devoted to the needs of others only attests to the greatness of who he was; a person all of us were privileged to have known.
Percy has left footprints in the hearts of many; his legacy will live on forever and he will never be forgotten."

Malcom.... wonderful news all the way around.  Congratulations on enjoying life and thank you for enhancing this inspiring section of hope and survival with your very own statements.  Counting on your yearly update, forever.
Hugs,
Marion

11

(12 replies, posted in General Discussion)

Lorna....not sure what you mean by swelling?  Has CT shown increase in tumor size?

12

(5 replies, posted in Chemotherapy)

moontje....as Duke has mentioned, other therapies are available.  At one point, patients build resistance to the therapies and are then switched to other available drugs.   Depending on the location of the tumor,  radiation can be of help.  Perhaps you can consult with an interventional radiologist or an oncology radiologist.  For now though I am crossing my fingers that the upcoming scan will show continuous tumor reduction. 
Hugs
Marion

jtaylor....I assume that within a short period of time other companies will begin similar trials. 
Marion

The study is conducted in these centers,  Contact information is listed on the clinicaltrials.gov website:  http://clinicaltrials.gov/ct2/show/stud … ocs=Y#locn

United States, Arizona
Call for Information (Investigational Site 0002) Recruiting
Scottsdale, Arizona, United States, 85258 
United States, California
Call for Information (Investigational Site 0007) Recruiting
San Francisco, California, United States, 94143 
United States, District of Columbia
Call for Information (Investigational Site 0005) Recruiting
Washington, District of Columbia, United States, 20007 
United States, Indiana
Call for Information (Investigational Site 0008) Recruiting
Indianapolis, Indiana, United States, 46202 
United States, Maryland
Call for Information (Investigational Site 0006) Recruiting
Rockville, Maryland, United States, 20850 
United States, Massachusetts
Call for Information (Investigational Site 0004) Recruiting
Boston, Massachusetts, United States, 02215 
United States, New Jersey
Call for Information (Investigational Site 0009) Recruiting
New Brunswick, New Jersey, United States, 08903 
United States, Pennsylvania
Call for Information (Investigational Site 0001) Recruiting
Philadelphia, Pennsylvania, United States, 19104 
Call for Information (Investigational Site 0070) Recruiting
Philadelphia, Pennsylvania, United States, 19104 
United States, Tennessee
Call for Information (Investigational Site 0010) Recruiting
Nashville, Tennessee, United States, 37232 
United States, Texas
Call for Information (Investigational Site 0003) Recruiting
Houston, Texas, United States, 77030

Christine......good luck with your appointment at Dana Farber. Knowledge is Power. You are doing everything right by learning as much as possible about this disease and by searching out a second opinion from a center treating a high volume of Cholangiocarcinoma patients. 
I also wanted to mention that we in constantly updating our website and have yet to add the information for liver transplantation. To be exact, we are in the process of obtaining re-print permission from two publishers prior to our posting it on the website.  However; I would like to mention that a subset of early stage patients  may be eligible for such a procedure.   You mind want to pose this question at the upcoming visit.
Hugs,
Marion

http://www.cancer.gov/cancertopics/fact … metastatic

17

(4 replies, posted in Introductions!)

I too would like to welcome you to our site.  Your story is rather amazing.  Your husband's  extremely early diagnoses of this cancer leading to a successful surgery was accompanied by numerous complications.  Hoping with all my heart for things to continue to move in the right direction.  I am wondering:  are your husband's current problems regarding the low blood pressure related to some of the medication he is taking?
So glad you came to our site.
Hugs,
Marion

18

(5 replies, posted in Hospitals)

Duke....so glad it went well for you and thanks much for the descriptive report. Is nice to know that all are in agreement with your next plan of treatment and that further communication is established.  Great.
Would you care to share with us the specifics of the genome testing mentioned? 
I also wanted to share that Dr. Alberts was the first member of our Medical Advisory Board (2006) and to this date is actively involved with our foundation.
http://cholangiocarcinoma.org/the-chola … ory-board/
Hugs,
Marion

As announced in the blue banner above, the highly anticipated webinar with our Melinda and Drs. Rosenberg, MD and Dr. Tran, PhD is looking for your participation and registration.
http://cholangiocarcinoma.org/new-upcom … l-therapy/
Tuesday, October 21, 2014,  4:00 – 5:00 PM (Eastern)
Hope you can join in.
Hugs,
Marion

ctwong.....thank you for sharing this incredible, wonderful news with us.  I am overjoyed to read this post.
Rose....  Not only is the treatment aggressively attacking the tumors, but the side effects are minimal as well.  Wonderful, wonderful news.
This is the first feedback we are receiving on this drug and I am wondering whether you could share a bit more with us?   What in particular are the side effects and how do you minimize these effects?
The benefits of  QiGong and Tai Chi are undisputable, but I was not aware of the difficulties performing these exercises.  Thank you for the enlightenment.  Perhaps, some day you can share a bit more with us.  In the meantime, I wish for continued success with your treatments and please stay in touch.
Hugs,
Marion

Suzzaz.....Sure wish we could meet under different circumstances nevertheless I am happy that you have found us. 
You and your husband have fantastic employers.   How is that that you have accumulated one entire year of sick days?
Suzzaz, I realize that patients need to be informed about the recurrence of this cancer, but many others as well as I believe that we need to focus on the upper curve of the equation. Try to stay positive in believing the 20% of all patients do not have a recurrence and for the 10-15% to work in your favor as well. 
So glad you found us.  Please continue to share with us - we are in this together.
Hugs,
Marion

22

(87 replies, posted in Introductions!)

Matt.....simply fantastic. 
Hugs,
Marion

Thanks, Gavin.  When it comes to Mom's we are somewhat in a similar situation therefore, positive thoughts are heading your way as well.
Hugs,
Marion

24

(21 replies, posted in Chemotherapy)

Duke...good luck.  Just wanted to mention that the needle biopsies have a high negative reading anyway.  Will be thinking of you tomorrow.
Hugs,
Marion

25

(6 replies, posted in In Remembrance)

JanBee........My heart is with you and your family in this most difficult of times.  The legacy of your dear Pete will stay with us forever on this site and in our hearts. 
Tonight when gazing at the sky I will search for another bright star....that of your dear Pete and and I wish for your heart to begin to heal - one day at a time.
Hugs and love,
Marion