Cholangiocarcinoma

Hi Jeff and Donna
How are your spouses doing? My husband has been quite well for the last few weeks, he has gone through the second round of the phase 1 trial, he usually has a few low day afterwards but then he bounces back. He has lower back pain and his Dr has put him on steroids, it has done wonders for him, some days he wishes he could go to work (he is on disability). He went for a CAT scan and X-rays last week, we should hear the results next week. We are a bit tense wondering what will show. If everything stays the same that would be OK. Everyday that he is here there are new developments in this type of cancer. It will be a year on Oct 16,2004 we knew somthing was seriouly wrong. Our family Dr called us at home on a Saturday morning.

Hi Lana, John has had his stent clog on him 3 times in the past month and a half. Each time he has to start from square one building up his blood count and his strength. The only effect from the chemo he has had is fatigue. If we could get the stent under control it would be wonderful. The Dr prescibed a drug used to dissolve gallstones (Actigall) and hopes it will work to make the sludge in the bile duct smaller so it will not clog as often. He is so weak and can't seem to get his strength back. Glad to hear your husband is doing well after the treatments - what is it he is on now? I'll pray that the CT shows good news. We go Tues for John's 3rd FOLFOX treatment. God bless you both. Donna

Hi Donna

Sorry to hear about John's stent, Don had about 5 stent replacements, but the last one was a metal stent and so far he has had no problems. Maybe your Dr could put a metal one in, they do not bend as much at the plastic. I know how it feels, every time Don's stent would block he would jaundice and develop a fever and each time he would be in the hospital for about a week. Good luck and God Bless.

Hi Lana, John had a metal stent put in a year ago, but when the tumor site bled (from radiation?)in Dec the Dr put plastic ones in also to stop the bleeding and kept them in to reinforce it (once the tumor started to grow this July. He's had them changed 2 times before and 3 times since July. Since he's been in the last time (just got home Mon) he's lost 8 pounds and has no energy. I'm focusing on high calorie, protein and iron foods, which gives me something productive to do to help. We got married 5 years ago, had been friends before that and he always says it took him 60 years to find the right woman - we're soulmates and this is so hard! Donna

Hello,
my 57 year old father was diagnosed with a cholangiocarcinoma in march 2005. unfortunately the tumour could not be removed by surgery. he has since been treated with carboplatin and gemcitabine but his ct scans show that there has been no improvement. does anyone have information about stereotatic radiosurgery? i have been in contact with 2 institutions one radiosurgery new york at the cabrini center and the other in miami known as cyberknife. Both claim that they can considerably improve his condition but i have my doubts. Does anyone know if this is similar or the same as radiation ablation? i would appreciate any information anyone may have on this treatment or any other possible treatments

Amandeep

Congradulations to your husband AND YOU! It is alot to go though. I was treated by Dr Gores and made it through the procedure. Don't let you husband get discourgaged. I made a website bileductcancer.org

I can only recommend MAYO I have survied the disease and if It wasn't for Dr Gores and others at Mayo I would not be here.

view my website bileductcancer.org

Hi Donna and Jeff

How are your spouses doing? I don't see very many messages these days, maybe everyone is dealing with new issues. My Husband is still here and still suffers a lot of back pain as his cancer had metastaszied to his lower 3rd and 5th vertebrae. He well be going into his 4th month of the trial drug in Dec, he seems to be holding his own. I hope and pray a lot, I want to believe that with positive thinking we can make some changes. He has started on steroids due to pain, but as a result he cannot stop eating, he looks so different he now has a very round full face, I hardly recognize him, but he enjoys his food, I can remember when could not eat at all so this is a welcome change.

Hi Everyone!
I am new to this website. My brother is 39 years old. He was diagnosed with cholangiocarcinoma in Oct. 2005. We have been searching for others who are dealing with this too.

We have been doing a lot of research as I'm sure many of you have too. We would love to get in contact with any of you who would like too. The more we share information the better it will be for all of us. Doctors seem to treat this differently. It's good for us to know what treatment others are receiving. Our family is working on setting up a website just for cholangiocarcinoma. It's in the beginning phases, but we are trying to put all the information that we are gathering there. We have also been in contact with other families who are dealing with this. Let me know if you would like more information. We would love to talk to you. Good luck in this battle.
Kelley

I can only pray others out there are fairing as well as can be expected with this terrible disease. My mom was feeling ill for months until abdonminal pain forced her into the ER where the promptly asked how long she had been jaundice. They live in FL and she (nor anyone around her) never noticed, just thought tanned :-} Couple surgeries to discover the cancer and off to Jacksonville Mayo. Great place. Many tests over weeks to determine if she was operable and she was. Immediately checked in and cancer removed BUT when the doc was in they sampled some spots... at first, during the surgery, the report was they were negative but second test of them later found them malignant. As most of you have found, this is a very agressive cancer, so I am told. The doc indicated during the week of the recovery that if he'd known the spots were cancerous before the operation, he'd not have performed it... my Mom has watched a few friends go thru chemo and does not want to have anything to do with it. We go back in a few weeks to talk to an oncologist but we're (mom's sons) expecting relatively bad news. My research has turned up that an elevated pH can effect tumors - is this urban legend?