cholangiocarcinoma

hubster · New User Joined: 02 Apr 2005 Posts: 2

[i]My mother was diagnosed with cholangiocarcinoma. She has tried two forms of chemo and the dr. just told her that (the dr.) doesn't have any other options. Though when my mother was diagnosed the dr. seemed like there were options, not to give up. I am now researching clinical trials for her. If anyone has any suggestions for our family we would be greatly appreciated. This is a very difficult time and the more information we can get and learn would be very helpful. [/i]

freeio · Posted: Sat Apr 02, 2005 8:26 pm Post subject: Cholangeocarcinoma treatment

I'm sorry to hear of the diagnosis and failed treatment.

I was also diagnosed with cholangeocarcinoma last year, and chose the surgical treatment as the best option. The surgeon (Dr. Selwyn Vickers - highly recommended) performed a Whipple procedure, where they removed the gall bladder, the head of the pancreas, part of the stomach, about a foot of intestine, and every lymph node they could reach. They reattached things differently when they were done. It took six hours on the table, and seven days in the hospital. The surgery was successful, and the head pathologist at UAB Hospital said that it looked like they got it all, although there is never perfect assurance of that.

That was followed by six weeks, five days a week, of radiation of the affected area, and chemotherapy at the same time (using Xeloda), and then after four weeks off, two more courses of Xeloda by itself. I am a week from the end of the last round of chemo. The CT scan last week showed no signs of anything returning, so that is good news.

My point is that there are several ways to treat this, and that you need to investigate the other options. Surgery is probably an option, and one worth asking about. The Whipple procedure is so complicated that I would recommend that if you go that way, to make sure that the surgeon is experienced in this. I can honestly recommend both the hospital (UAB Hospital in Birmingham, Alabama) and the team headed by Dr. Vickers, although there are several wonderful cancer centers spread around the country.

Get a reference to a major cancer center near you and go.

Marty
_________________
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whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

hubster · New User Joined: 02 Apr 2005 Posts: 2

Thank you for the information. Are you aware of other options? We are doing this from scratch. My mother's dr. cannot suggest other options which is very frustrating. We wish our dr.s could help us with suggestions but.....

freeio · Posted: Sun Apr 03, 2005 11:03 am Post subject: Treatment options

I am not the person to provide all of the options for you. There are doctors who specialize in this sort of thing, and I would recommend finding one. I am quite serious about getting a referral to a major cancer center and going there. Because this is hard to treat, you need to find the best team you can to deal with it.

Now, I must say this: As I understand it, cholangeocarcinoma can quickly develop into pancreatic cancer, for which the expected lifetime is very short. As such, do not delay to get this taken care of.

Marty
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello

Thanks for posting. Cholangiocarcinoma can be treated surgically if the disease is its initial stages. If the disease is more extensive, unfortunately surgery is no longer an option. Also, if the person if very debilitated, surgery carries a much higher risk.

In terms of chemotherapy, unfortunately there are not many options. I would agree that clinical trials could be the next step.

best regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

jajo4751 · New User Joined: 06 Apr 2005 Posts: 1

[quote="hubster"][i]My mother was diagnosed with cholangiocarcinoma. She has tried two forms of chemo and the dr. just told her that (the dr.) doesn't have any other options. Though when my mother was diagnosed the dr. seemed like there were options, not to give up. I am now researching clinical trials for her. If anyone has any suggestions for our family we would be greatly appreciated. This is a very difficult time and the more information we can get and learn would be very helpful. [/i][/quote]

I heard there is a procedure where they insert "seed" into the Bile Duct. I know of a woman that had it done a few years ago. I will try to get more info on this and pass it along.

lauraseigle · New User Joined: 19 Apr 2005 Posts: 1

Hi,

I am researching alternative treatments for my sister's cholangeocarcinoma, or liver cancer. She was diagnosed in April last year and was on the surgeon's table within two weeks having 30 percent of her liver removed. In December 2004, tests showed she was cancer free. But two weeks ago, she found out her cancer her cancer had returned. It is inoperable. She is pursuing conventional treatment - chemotherapy - with the best doctors in New York and Boston. I am in charge of researching possible alternative treatments that she can do in addition to chemo. She has three young children she plans to see reach adulthood so recovery is a must! Thank you for any advice.

Laura

sheikhster · New User Joined: 24 Jun 2006 Posts: 2

There is a new treatment option available. The drug is called DAVANAT and it is mixed with 5FU. Before you move on - just listen. 5FU has got horrible side effects but when mixed with DAVANAT it has ZERO side effects. The mfg is Pro Pharmaceticals. You have to go to their website and look at the videos to understand. There is a Phase II trial about to start but it looks like it will be super hard to get into the trial. If you can get in and meet the requirements this is going to help. We already know that 5FU kills cancer but the side effects are aweful. With zero side effects what do you have to lose with trying the therapy.

By the way they have a 70% stabilization rate on stage III/IV patients. Compare this to AVASTIN at 24%. Just something to think about. Dig through the website www.pro-pharmaceuticals.com

trishw · New User Joined: 24 Feb 2007 Posts: 2

I was diagnosed in 2004, a year after I had visited the doctor and told him I thought something was wrong. When I was diagnosed they told me I was in Stage IV. I went through chemotherapy from June of 2004 until Oct 2005. I had Xeloda and ? (can't remember). At first we had good results and the tumors shrunk..but it didn't last and the tumors started to grow again. I was sent to UCLA to see if the tumors could be cut out and was first told they could do it. Then that changed to "no". And along the way I did have the 5FU and thought I was going to die! It was pretty bad. I was sent to City of Hope to see about ablation. They were scheduled to do and then my oncologist decided it was too risky. Then in August of 2005 I was put on the transplant list. The list at UCLA was very long and they thought I should go on a clinical trial while I waited. However, there was a guardian angel dressed in "coordinator's" clothes who advised me to seek out another hospital with a shorter list. I did just that and was transplanted in April, but before I was transplanted they injected chemo directly into the tumor through the artery. So for everyone dealing with this disease I am here to tell you that miracles do happen.

sheikhster · New User Joined: 24 Jun 2006 Posts: 2

Since that last time I've posted there have been some advancements or not really advancements but things further along in the approval process. DAVANAT approval looks to be a foregone conclusion. They are meeting with the FDA to file their NDA to market the drug. It is safe beyond all reasonable doubt. This drug is the "magic bullet" for cancer. It renders 5FU non toxic to our system.

This chemo treatment you talk about right into the tumor makes a lot of sense. I don't know why they didn't do that for people sooner. I have also heard of an ultrasound that zaps the tumor. It slightly raises the temperature of the cells and they are destroyed. There is little collateral damage. This treatment originated in China.

So a lot more miracles are going to keep happening is my point.

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