Bile Duct Cancer, any good news out there?

Hi Jackeline
My name is denyse. I had sugery in sept 05
to remove a tumor in the right hepatic duct,they also removed 60% of my liver. the biopsy came back
negative on the tumor and the liver.the docs told me this is very rare.what i am wondering is do you still have pain nausea,tiredness at times? I'm starting to think I'm nuts because the doctor says I should be feeling almost back to normal,I've had ct scans UGI -rays,I get low grade fevers.I feel like I am whinning when I tell my doc this and guilty to ask for pain and nausea medicine.any info would help
thanx denyse

Walter
I too, was operated on by Dr Fong. What a gifted man he is. He resected my liver, and took a few lymph nodes out. Since the lymph nodes were involved, the long picture looked bleak. HOWEVER, after 7 months of Gemzar and Xeloda, my scans have been clear since July 2004. (I was operated on in Dec 2003)
Hang in there, maybe our common link holds the answer to this disease.

I read your message and think I can have a good dialogue with you. I am not a doctor but I have done a lot of research and you should look into/follow the work of Pro Pharmaceuticals.

They have a new drug, well according to the FDA it is even though it has no bilogical activity, that encapsulates the chemo drug and delivers its payload to the cancer cells. The drug is called DAVANAT after the inventors and they got this drug after their 4th try at making it back in 2001. DAVANAT is a carbosome and encapsulates the 5-fu. Go to the website and check out the video. Anyhow, the DAVANAT has an affinity for the Galectin-3 lectins which are overly expressed on 75% of all solid tumors. Well guess what, in phase I humans they had a 70% response rate. Are you surprized - probably not. Well now you will be - this was done on stage III/IV patients after 30 days. That is how quick this works. Now let me throw you the kicker. In order to get into this trial you had to be refractory to 5-FU and failed every other therapy. Now sit down - There are ZERO side effects.

They are in Phase II for colon cancer - they met their primary endpoint and stopped enrollment after 15 patients. They have 2 Objective responses and more coming. Think about the number and compare them to AVASTIN. On stage III patients AVASTIN has only a 1% ORR! vs 14% and climbing every month as more responses keep coming. Everyone is stabilized.

What does this mean for cholangio patients. Well DAVANAT works on a wide range of cancers including Cholangio. There are 2 compassionate use patients with cholanio and I believe both are alive. One person was as Oshner and they lost track of her after the hurricanes hit. I believe she is 100% better but no one knows for sure.

Here is my e-mail if you want to contact me to discuss this more --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- This board doesn't get too much posting.

In my opinion this is the best hope right now for all Cholangio patients. Cancer is all about the receptors not cocktails of chemo.

My dad has been diagnosed with Klatskin tumor. No one will talk to us or see him. Who did you see. Any help is welcome.
Jay

Hi, My dad just has been diagnosed. We are in TX and are hearing the same thing you are. No wants to look at him. Scott and White in Temple, TX put a stent in his liver for the bile to drain. We wanted to go to MD Anderson so we left Temple and now Anderson will not take us. Temple will not return phone calls no help from American Cancer Society. Boston and New York will not take us. If you hear any thing good please let me know.
--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

What is your current prognosis?

I also have Cholangiocarcinoma (Klaskins Tumor). I found out on May 8, 2006. I spent most of Month of May having Bile Duct drainage tubes inserted into my stomach and right rib cage inorder to drain my liver. I am now being treated with Xeloda and Gemzar at SCCA (Seattle Cancer Care Alliance). The program I am on is two weeks of taking Xeloda twice daily for two weeks and on each Thursday I get Gemzar through infusion. The third week I take no chemo, and I also have no side effects. On this coming Thursday after infusion I am getting a CT scan which should show what is happening to the tumor. Hopefully it will be shrinking. The other interesting point about my tumor is that I have no pain, the only pain I have is from the drainage tubes and they are getting better.
If it wasn't for the drainage tubes I would not no I had a tumor. Please let me know what is happening with you.

Pete in Washington

hi there-

i hope that your mother is okay but much of the news on bile
duct cancer is quite grim...

any advice you could give me? i'm almost in tears writing this.
it means so much to me that so many people are willing to help
out.

let me know if there's anything my family should be looking
into.

my mother and father are in winnipeg and i'm in los angeles.
i'm going home to see her on the 23rd. thay've started chemo
therapy but there have been some setbacks.

peace and thank you for your time,

david

My mom has recently been diagnosed with bile duct cancer as well and took her 2nd treatment of gemzar this week but is suffering with fevers every night and has a very difficult time eating, lost a ton of weight, very weak....she is seeing 'one of the best' (so they say) oncologists in NY but we can't seem to get any answers out of him. She has a porcelained gall bladder as well. Does anybody know anyone with this cancer where Gemzar actually worked? They said that they can't operate on her because of the tumor location yet I am reading about people who did undergo surgery. The doctor also said that her liver is healthy??? Any feedback from anyone would be GREATLY appreciated. I don't mean to add to the grimmness but alot of what I am reading is going to help my brother better communicate with her doctor. Also, this oncologist has requested that only one family member be the spokeperson....we can't all (4 people besides my mom) go in with her when she sees him, but my mom likes him so I am stuck.

I was told in August 2006 that i have bile duct cancer as you can guess it came as a real shock as I am only 31 with a lovely wife and a 3 year old son. I was transfered to a hospital in Belfast and had a whipple operation on the 2nd October 2006. The docters are now saying the tumor was removed, margins are very good. It had spread to 1 lymph node although I had 11 removed which means 10 are clear. The docters are telling me i am 'cured' their words. As you can guess I am delighted and it seems the cancer was spotted just in time. I am due to start Chemo next week to make sure any cells that were left behind are killed off I am getting the drug 5FU. I have no doubts my recovery has been thanks to God.

Andrew