Introduction (Page 1 of 2)

I'm so excited to see this, great job!!

The site looks great!  Thanks for providing such a valuable tool!

My father age 64 was diagnosed with cholangiocarcinoma and spread to the liver in february 2005. He was offered chemo but not as a cure. He went on the chemo regime with oxaliplatin and gemzar and xeloda. His tumor regressed sligthly but has now progressed and they have stopped offering chemo. So now I am desperate for starting a new battle against the tumor. But here in Denmark if one thing doesn't work you are not likely to get the chance to try another thing.

Any advice would be much appreciated

Ranner,

Have you looked at the chemotherapy spread sheet?  You might have your Dad take that in to his oncologist and see if he would be willing to try a different combination.  Their are lots of oncologist trying lots of different things.  Those are all drugs that people with cholangio are wither using, are being used in clinical trials or researchers are looking to use them against cholangio - ofcourse, nothing proven, but nothing seems to work for everyone with this disease. 

The other option is to get him into a clinical trial.  That spreadsheet is also available (under the blog heading) and that may be his best shot, especially if his oncologist doesn't feel like there are other options - there are always other options.  Good Luck - let us know how it's going.

Stacie

Great job on the site!  I am so happy to be connected with so many people with so much info to offer.  I know this site will be a huge success.

Kelly Lester
Cholangio in Houston

Just wanted to let you know, if you are viewing this site - we think we will have everything ready to go on Monday.  Rick is putting together a profile so that when new people register they can fill out the information.  Unregistered users can browse the site, but will not be able to see profile information, we'll keep that as private as possible. 

Here is what we are putting on the profile.  If there is additional information that would be helpful to you, let us know.

Name:
Patient or family member/friend:
Age (of patient):
State or Country:
Exact Diagnosis:
Date of Diagnosis:
Oncologist/Oncology Team:
Where you are being treated:
Current Therapy:

Past Therapies:

This will be a section where you can put in the chemo regimens you have tried, CT/PET scan results, anything that you have tried in the past and the results.  Dates will be important for others, especially if something is working.  I think this will be a great resource for all of us. 

Alternative Therapies:  Anything you have tried that has been helpful herre as well.  Or something that was particularly unhelpful (haha).

Again, if you have suggestions, let us know.

This is a wonderful way for people to come together and share information. Thank you for taking the time and energy to put this site together for the benifit of our families, caregivers, and all of us diagnosed with cc.
     My name is Pat and i am 64 years old. I was diagnosed November 2003. I will have to go over my records to get the information on all the chemo treatments i have been on. I promise to do that soon. My tumor has advanced into my liver and continues to grow. My Dr says that stage one clinical trials  is my only hope. I feel and look fine. I have no pain and the only ill effects have been from the chemo. I am off chemo now and other than feeling anxious and depressed I am doing well.

Hi everyboby! My husband was diagnosed with cholangiocarcinoma on nov 28th 2005
and was an excellent canditate for surgery(whipple).  Alot of these message boards
concentrate primarily for cholangio that affects liver his did not it was in lower region
and called common bile duct., affecting pancreas,gallbladder stomach and small instestine. I wastold this is very rare? Is anyuone famailar with this type of cholangiocarcinoma?  Any help would be greatly appreciated  I am feeling very alone and answers are hard to come by.  Thanks!!!!!  Nice to see another board!

Hello, everyone.  I am very happy to find this site and I share the optimism that you have all expressed in the early stages of this forum.  I was diagnosed originally on January 7, 2005 with a large (8cm) tumor and several smaller ones in my liver, presumably metastatic.  But after running me through many, many tests, it was determined that I had cancer of unknown primary source.  After the pathology from my surgery in August, during which the large tumor was removed, my diagnosis became cholangiocarcinoma.  I have numerous very small lesions on my liver that are not visible in CAT scans and  do not "light up" on PET scans.  I have responded very well to a chemotherapy regime of gemzar and taxotere (docitaxil).  At this point my doctors are trying to develop a next step treatment.  I have responded well to the chemo and surgery to date, but am concerned about what the future holds for treatment in terms of short term and long term effects.

Herschel Conner
Tierra Verde (St. Petersburg), Florida

Hi Everyone,

I would like to introduce myself, but before that like to thank Kelley, Stacie, Mark, and everyone else involved with cholangiocarcinoma.org.

I am now 40 and was diagnosed around mid July 2005 with cholangiocarcinoma.  At that point I had I believe 5 tumours in my liver, about 6 tumours in my spleen and several lymph nodes involved.  On July 26th, 2005 I started chemo after seeking a second opinion.  That chemo was every two weeks and comprized gemzar, oxaliplaten, avastin and Tarceva.  On Sept 6th, 2005 a CT scan showed most metastatic cancer to be shrinking (80%) and of the liver tumours only 2 had any sign of shrinkage, around 20%.  On NOvember 28th, I had a CT\PET scan and all of the metastatic cancer aprt from one lymph node was no longer detectable on either CT or PET.  The disease in the liver was described as stable.  Since the ends of October the Oxaliplaten was replaced with Xeloda because of liver toxicity and concern about peripheral neuropathy.  Admittedly, the xeloda has most liukely been more off than on because of side effects.

I probably shouldn't be writing all this here as Kelley asked for website suggestions, but I guess this is my introduction.

Keep up the good work you guys and my best wishes to all.

Alex.

Alex,
You seem to have had a good outcome from your treatment. How are you feeling?

As I understand it you had four drugs together every two weeks. Were the side effects very severe? Are other people with your condition on the same regime and is it effective for them?

The disease in the liver in stable and all  metastatic cancer had gone. What do the doctors say you can expect from here on?