Cholangiocarcinoma

On 8/23/2005 Elizabeth Ann wrote:

Hi, my name is Elizabeth -- my brother was just diagnosed with cholangiocarcinoma - he's 48. I don't know too much about this cancer except it's rare and spreads fast. I feel so helpless -- his doctor prescribed my brother some chemotherapy medication (oral) but his doctor told us that this is not a cure that the chemo medication will or might slow down the growth but there is nothing else to be done. I'm having a hard time accepting this... there has to be some type of procedure out there that can help. If anyone could help me with some information, I would deeply appreciate it. As you all know, this is very hard to handle. Again; thanks for any info I can get.

i can relate to you Elizabeth.....my husband died very quickly when the cancer spread to the bile ducts through his liver.....and the next thing i knew ............he was gone..............just like that.  i want you to know that you've got to remain strong.......this is a cancer that kills..... though i think the chemo therapy killed my husband.....within 6 weeks of treatment.  Your in my prayers......and wish you the best. i'm here for ya...if you need to talk.

take care my friend,

stephie~

On 9/1/2005 Suzieb wrote:

Hi Elizabeth: I was diagnosed in May, 2004 with bile duct cancer. After being given the news that it was inoperable by a Boston hospital and confirmed by an oncologist, I was lucky enough to be given a surgeon's name from Lahey Clinic in Burlington, MA. This area of the anatomy is his forte and he operated on me in June, 2004. I lost one lobe and half of the other at that time. By September, the remaining lobe had gone back and was healthy. I celebrated my first annual check up with great numbers. I was told that there really is no chemo or radiation treatment specifically for bile duct cancer. They use the pancreatic cancer treatment as a model. My surgeon is well known for his procedures and has been doing it for a long time. He is also the pioneers for liver transplants in this area. I am so lucky to have had him. I am 54 years old and have been able to see three more grandkids born and a fourth on his way. I thank "God" every day that I am able to swing my feet over the edge of the bed. I had alot of people praying for me, and keeping my thoughts positive. It is very important to do. If I can help in any way to you or anyone else, please let me know. My prayers are with you and your family.

Hi Suzi,

My father is exactly in the same condition. But we are in India and can't afford to go to USA for ttreatment..If you can share with me the doctor's contact in USA who operated on you, I will get in touch with the doctor and request him to speak to my doctor..hope you can understand the agony I am going through..pulling to evry bit of hope..my number is

...Kindly help...

Elizabeth:

They blocked out your phone number.  The doctor I went to is Roger Jenkins, Lahey Clinic, 51 Mall Road, Burlington, MA.  I am not sure if they will allow his phone number through but it is 781-744-2500.  My prayers are with you and your family.  I do know who difficult this is for you.  I only pray that the God will heal him soon.  Please keep me posted.

SuzieB

On 2/4/2006 Jeff_s wrote:

A more recent development in this area is the Novalis Shaped Beam system. I was very interested in this but was told by 2 centers that these tumors are not amenable to that treatment because it requires very precise imaging, which the location of a Klatskin tumor like my wife has makes very difficult. There is also Therasphere radiotherapy. It involves the injection of microscopic radioactive beads directly into the vascular supply of the tumor. They radiate the tumor from the inside out for about 4 days and then go inert. Success at getting at least some significant reduction in tumor size is up aroung 75%. See Northwestern memorial Hospital, Dr. Riad Salem, as a possible place for that. Radiofrequency ablation (done at the same place) is also a potential option. Consider also Steven Strasberg at Washington University in St. Louis. Good Luck. Jeff S.

Hi.

I'm a UK national who has been living and working in Thailand for most of the last 10 years. My father was recently diagnosed with chalangiocarcinoma, and has just undergone Whipples surgery a couple of weeks ago in the UK via the National Health Service. I've just returned to Thailand from visiting for a week or so, and like many people have been finding out what I can on the internet. Being in a different country also makes me feel even more determined to try and help somehow.

Anyway, I came across this website after thru Google. Novalis treatment is available at Wattanosoth Hospital in Bangkok, Thailand. They list chalangiocarcinoma as one of the things Novalis can be used for. I cannot comment on the treatment or the hospital first hand. But I thought people may be interested.

What I can say is that having lived here for 10 years, there are some fantastic international class hospitals in Thailand, and often to high international standards. Thailand has also put great efforts into linking tourism and medical treatments. Costs also tend to be much lower than private hospitals in the UK.

As examples:

- you can usually walk in and see a specialist in many fields (don't know about cancer yet) same day and for GBP 10 consultation in a leading hospital.

- When my wife had our first baby we went to the number one hosital here (Bumrungrad) and all in everything cost about GBP 1,000 including 3 days in the hospital, delivery, nursery care etc. They were fantastic with top class facilities. It would cost probably 5 times that in the UK if you went private.

For people looking for ideas/alternatives I hope this may be of use to at least some. When my father comes to visit us on holiday in a few months, I hope to convince him to at least go for a chek-up and second opinion.

http://www.bangkokhospital.com/eng/wattanosoth_Novalis.aspx

In November 2007 my friend was found to have a 10cm tumor on his liver. A biopsy
showed the tumor to be cancerous, and later pathology demonstrated that it was
specifically cholangiocarcinoma (bile duct cancer). A liver resection followed,
and the pathology report showed clean margins on the tumor and some spread to
nearby lymph nodes. Surgery was followed by 4 months of chemo with GEMOX
(Gemcidibine and Oxaliplatin) and 28 sessions of radiation accompanied by low
dose of a chemo drug FU. A subsequent scan (September) showed presence of cancer
in abdominal lymph nodes and lungs. This was followed by four FOLFOX treatments,
and the scan that followed that (November) showed no new cancer, but some growth
of existing cancer. Now a new drug Taxol is being employed once a week for
hopefully six weeks.

Jeff_S or anyone else with ideas about promising treatments or any other relevant information please respond to this post.  Please also send the research you have compiled to us at hstephens at stephensstephens dot com or my contact information can be found at stephensstephens dot com.  Thanks for anything you can do.

On 8/30/2005 Jeff_s wrote:

If you send me an email address, I will send you all my research on cholangio and pancreatic, which are close cousins and often treated with the same chemo. You can contact me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---. My wife is being treated in Brooklyn with 5 different drugs simultaneously. So far, so good. Hang in there. Jeff S.

my father has this type of cancer, please send me all of the info. that you can, please. thank you so much.

Can you please send me all of the info you can on the doctor and treatment.

thank you so much.

On 11/30/2005 Suzieb wrote:

Eric:
I know how hard it is when you are going through the process. The main thing for your family to remember is that if one door gets closed to you, another one will open. I will pray that Dr. Jenkins is able to help you all. I am due to see him 12/6 as my 1.5 year check up. I had labs done last month and they were still good. Believe me, if Dr. Jenkins can do anything, he will. He is the most caring physician I know. He was just recently honored by the American Liver Foundation for his work.
Please keep me posted. My heartful prayers are with you.

can you please send me all info, my dad has been diagn. with this cancer.

On 9/20/2005 Wamba138 wrote:

Hello everyone,

I have posted on this section and on the gallbladder cancer section. My wife, 47, has stage IV, diagnosed in April. She is on a clinical trial of rebeccamycin and oxaliplatin at University Hospitals in Cleveland, Ohio. Her doctor is Asfin Dowlati.

Only one round but my wife has improved dramatically. The doctor had one other gallbladder cancer patient on this study and he said they responded also. See my other posts for more info. My email is wamba138 at hotmail dot com if you want more info.

Good luck and keep fighting!!!

Rick

please send me all info. my dad has this type of cancer.

Jeff S

I just got home from the hospital where my mom was diagnosed with pancreatic or bile duct cancer.  She has been in the hospital since May6 when the oncologist came in today to talk to us, he bluntly said that my mom has a kind of cancer that can't be cured/inoperable.  I am desparetly looking for some answers or advice.  We had no idea it was this bad and we need to find something to give my mom some hope.  They are now going to decide if they should put a stint in or go in and attach the pancreas to the stomach so they can remove the tube in her nose and let her eat.  She weighed 143 on May 6 and now she weighs 116 while we have been waiting for all he biopsy results and whatnot to come in.  If you have info that there is hope for this type of cancer I would greatly appreciate your responding as soon as possible with the information that you have available.  You can send it to bldg2000 at centurytel dot net Good luck to you and your wife and god bless you both.  Jeanne