Introduction
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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.
Hello again
Thank you for your replys I found both the chemo site and the sits for trials. But I live in Denmark, Europe and our lab results are for instence measured in bilirubin lower than 22 if you are healthy. But in USA it is to be lower than 3 mg/dl I believe. How can I convert these number into european numbers.
Kind regards
Ranner
stacie wrote: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 HoustonActually Ranner,
It is under the “general info” tab, under worksheets. Just changed the name of that page, sorry if there is any confusion!
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
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
this looks as if it will be a great resource, thankyou. I hope that we are able to share information freely on this site – other sites have edited my postings when i have tried to help others and give contact details for a surgeon here in the UK. There are no support groups, forums etc in the UK available for this rare form of cancer. Being well informed is crucial.
I guess I will introduce myself, too. I’m Geret, Kelley’s husband. I may not post much, but I will watch this site all the time. I hope many will find this site useful.
I am very excited to see how this discussion board can help others. I’ll bet it won’t be long before there are many people accessing this important tool.
Hello Everyone,
I thought I would just introduce myself. My 39 year old brother Mark was diagnosed with Cholangiocarcinoma in Oct. 2005. As we have been searching the web for good information and solutions, we have realized that there are not a lot. This website can help all those with cholangio and their families to find information etc about this disease.
We have found it very helpful to talk with others who are going through this. Most doctors don’t know a lot about what to do. We can all help each other by sharing the information that we get.
We hope that you will log on and share your information so that we can all help each other.
Kelley
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