Topic: Introduction

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

Re: Introduction

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.

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

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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.

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

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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.

Re: Introduction

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

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Forgot to write what a great initivative this website is!

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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

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Actually Ranner, 

It is under the "general info" tab, under worksheets.  Just changed the name of that page, sorry if there is any confusion!

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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

Re: Introduction

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

13 (edited by stacie Thu, 12 Jan 2006 15:19:06)

Re: Introduction

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.

Re: Introduction

Hi everyone, my name is Kellee and my mom, 65, was diagnosed last fall with Cholangio.  we don't think it has spread beyond the ducts yet but as they say they don't know for sure.
Anyway I wanted to share information about a treatment that my mom will be receiving in the next few weeks...PDT.  Photo Dynamic Therapy.  She will be injected with Photfrin (sp?) a substance that collects in cancerous cells and makes them light sensitive.  She will then go in for an ERCP and our doctor (Paul Yeaton at the University of VA medical center) will put a special light down and turn it on.  The cells that absorbed the photofrin will die.  The only gets rid of the cells the light touches but it is a life extending treatment that isn't painful and doesn't have too many side effects as with Chemo and radiation. 

The mayo clinic in MN offers this treatment as well, I think.  Feel free to email or post with questions.

By the way--great website!  Please let me know if there is anything I can do help out and make it even better.

Kellee

Re: Introduction

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.

Re: Introduction

As a Caregiver for 5 months, I am HAPPY to see this site.  We still have a lot of recovery goin on but are blessed that my husband,  73 years old, is now Cancer free. We have lived a nightmare since August  and  I feel like a "cancer bile duct pro"! He had an aborted surgery after 4 hours in August as dye leaked on his pancreas during his endoscopy and destroyed his pancreas. Then he had 2 e coli infections before his "real" surgery October 3rd. We were out of town for all of this, a 2 week vacation turned into 10 weeks. On the plane ride home October 29th the tubes  came out of his stomach and I am sure Midwest will never let us on again! In November he developed a hole at the new connection and spent 1 month on IV only, no water, to try to heal the hole. We will know for sure in 2 weeks. The worst is continual hiccups and itching. Any feedback would be appreciated.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

17 (edited by rpratko Sat, 14 Jan 2006 13:16:57)

Re: Introduction

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!

18 (edited by VMccrea Sun, 15 Jan 2006 09:58:28)

Re: Introduction

My name is Valerie McCrea. I am 37 and was diagnosed with CC on Oct 21, 2005. I am on Gemzar/Oxil and Avastin, I have tumors in my liver and 2 lymph nodes by my Pancreas. I also have some seeding on my diaphram. I am being seen by Cedars Siani Hosp. in L.A. Dr Drazin 310-385-3343. I have had 5 rounds of Chemo. My sixth will be Jan 17th. I had a PET/CT done a week ago. Pet showed cancer activity down. CT showed stable but slight growth in a bigger tumor. I feel fine. No real side effects from Chemo. Next scan in 4 weeks to see where we are at. I am getting a few other opinions right now as well to confirm or not... whether I am on appropriate treatment.
Stacie-This is great! Thanks for putting this together.
vmccrea@gmail.com
Valerie

Re: Introduction

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

Re: Introduction

Hi Everyone,
I just wanted to say how glad I am to be able to get on this site and see what kinds of things you are all doing.  Isn't it interesting that we are all dealing with the same disease and yet our doctors seem to handle things differently?  That's why it's so good to hear from you.  I think it helps to give us all hope.  I wish I knew how to answer all the questions that are asked.  The good thing is that the more of us that gather on this website, the more information from different places in the world we can receive, and the more chances there will be for someone to be able to answer our questions.  Keep the information and good vibes coming.  Know that we are cheering for each of you and your loved ones. 

Love, Kelley

Re: Introduction

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.

Re: Introduction

Thank you so much for starting this website.  It was something I wanted to do months ago but battling cancer is a full-time job and I just never got around to it.  My husband (41) had cholangiocarcinoma and tragically died on November 29, 2005.  He lived 14 months after his diagnosis.  I really hope this website can help others fight this disease and even beat it.  I wish all of you the best in your struggles.  I will post more on my husband's story under treatments so hopefully others can learn from his experiences.

Re: Introduction

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?

Re: Introduction

Hello All,  I just came across this website and registered today. My Dad, 76 has been diagnosed with cholangiocarcenoma. They have found some cancer spreading to his regional lymph nodes as well. He isn't in great health overall, and doesn't look to be a candidate for any major surgery. For me, this site is about education and learning everything I can about helping my Dad down a difficult road. Hopefully the insight of you folks, this website and others can help us to help Dad with some tough decisions that he is facing.


To those who started this site - Thank you. I have already forwarded the URL on to my 5 siblings as well.

Re: Introduction

Hi Everyone,

My husband, 39 years old has been diagnosed with Advanced Cholangiocarcinoma on Oct. 5, 2006.  It had spread on his stomach lining and in his lungs. He had ERCP on Oct. 7th,  had Laparoscopic surgery the following week and started his chemo on Oct. 31 and Nov. 1, '05, bi-weekly--Gemzar and Oxaliplatin.

He went to work on Oct. 5, (feeling really sick the day before) so he went  to the ER.   At first, the doctors thought he had hepatitis but after running more tests and CT scan, they told him that he has cholangiocarcinoma, that same day. Life has been changed completely since he came home from work that night!

He is in the navy, stationed at the National Naval Medical Center, Bethesda,MD.  where is being treated.  His oncologists are from the National Institute of Health. He had CT scan on Dec. 20th and so far his cancer is stable.

Best regards to all.  I hope that you will find the best care/cure  and continue fighting this dispecable disease!  I KNOW, I AM!

Edith (Annapolis, MD)