@ champion - So happy that you will be getting a new liver soon, prayers that everything will go as planned.   Le is not a candidate for a liver transplant bc he had a biopsy done back in January to confirm cc.  Had I'd known that a biopsy would exclude him I would have requested they confirm it a different way to keep that option open.

I am sorry to read your news regarding your husband Le.  There must be so many questions and thoughts you both have.  This forum has support, advice and credible information in abundance. 

Please let us know how your husband and you/your children all are and I truly hope that the chemo produces some good results for Le.

I am so sorry you had a reason to be here and that Le and you have been through so much already.  Sounds like you both have your gloves on and are in fight mode.  That is such an asset when fighting this cancer.

It does take awhile to come to grips with this type of diagnosis so you are not alone there. Many on this site have described their disbelief and how unreal getting this news is for them. 

I think you are doing great, getting a second opinion is paramount with this rare cancer.  I have heard great things about Dr. Javle, so sounds like you and hubby are in good hands.

Take care and stop back and update us often.  We are here for you!!
-Randi-

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about Le. But you have come to the right place for support and help and I so know that you'll get a load of that from everyone here. Thanks for sharing everything with us, you and Le sure have been through so much already.

I'm sorry to hear that your husband surgery was aborted after it was started. Unfortunately that is quite common and it has happened to people here or to their loved ones. But please do not give up hope. My fingers are crossed that the Gem/Cis gives the best possible results and please let us know how that goes.

We are glad that you have found us too and we will do all we can to help in kicking CC's butt, we like doing that here!!!

You said that you are grappling with the reality of Le's diagnosis, that is very normal. There is a webinar video here on the site that may be of use to you. It is by our Dr Giles and should you want to view it it can be found here-

http://www.cholangiocarcinoma.org/media.htm

Keep coming back here and if you have any questions feel free to ask and we'll do what we can to help in answering them for you. We know what you are going through right now and we care.

My best wishes to you and your husband,

Gavin

A brief timeline of events:

Jan 2: Went to primary care doctor because of severe itching

Jan 10: Became jaundiced dr ordered labs, ultrasound, & CT scan.  Bilirubin was at 18

Jan 16: We were told it was cc but still needed a biopsy to confirm and ERCP to place stent to relieve symptoms

Jan 21: Went in for outpatient ERCP for stent placement to relieve symptoms of the blocked duct - Procedure failed and was hospitalized for a week due to severe pancreatitis

Jan 24: Had biliary drain place due to the failed stent placement and a biopsy was done to confirm cc - I wish I had known that performing the biopsy would exclude Le from a liver transplant.  I hated that one treatment option was crossed out and I couldn't do anything about it.  Bilirubin levels at 22.4

Jan 25-Mar 1: Discussed options with primary care doctor and she said that we really don't have any oncologist specializing in cc referred us to MD Anderson.  Insurance didn't think we needed to be at MDA so they didn't approve enough coverage for MDA to accept my husbands case.  So we had to find an oncologist in town to agree and call insurance to advocate on my husbands behalf.  After our oncologist spoke with our insurance company, they amended the coverage and MDA accepted my husbands case in days.

Mar 21: We met Dr. Thomas Aloia for an initial consult.  He said that he's 70% confident that Le is a surgical candidate.  CT scans didn't show any metastasis and labs are stable.  CA 19-9 and CEA markers are normal.

Apr 2: Day of surgery.  After 3 hours Dr. Aloia aborted the surgery because he found that the cancer had metastasized to the peritoneum.  He did remove the gall bladder to prevent possible spread of cancer due to proximity it to the bile duct.  Biopsy on lymph nodes were all positive for cancer.  Hospitalized for a week for recovery.

Apr 8: Met with Dr. Javle to discuss our options.  He prescribed gemzar/cisplatin to be administered by oncologist in our hometown.  We will be back to restage in July and discuss targeted therapy.  Dr. Javle said prognosis is 6 month without chemo, one year with chemo.  It felt like a ton of bricks just came crashing down when he shared the typical prognosis for stage IV cc. 

Le started chemo May 1st.  He had his fourth round this past Thurs.  For the most part, chemo fatigue and the body aches are the symptoms he's experiencing.  It seems that Le has more problems with the biliary drain then anything else (excluding the actual cancer).  He's has had the drain replaced 4 times since January.  He still has constant pain at that site, which he controls with tramadol and he takes oxycodone for the breakthrough pain.

Le's bilirubin is down to 1.3 which is phenomenal compared to were it was at back in January.  But his CA 19-9 and CEA was negative and is still negative.  Our oncologist said he really can't tell if the chemo is working because Le has no tumor markers even though the cancer has already metastasized.  Has anyone else heard of such a thing?  We will be back at MDA in July to restage to see if chemo worked for Le and also discuss targeted therapy.  Only the primary tumor in the bile duct shows up on images, so I don't really know how doctors will be able to track the progress of treatment and such.

eli: thanks for your advise.. I asked Dr. Chow and the Government Dr.the same question (do RT private and Chemo at government), but they both rejected and said who will be responsible if anything happen...

You wrote:

You can lower your out-of-pocket cost by doing IMRT with 5FU, followed by Gemcitabine and Cisplatin. This adjuvant treatment plan is common in North America. My wife had this treatment after her surgery.

I'm not aware of any data to say that IMRT+Xeloda is more effective than IMRT+5FU, or that Xeloda/Oxaliplatin is more effective than Gemcitabine/Cisplatin.

Note that 5FU and Xeloda are similar drugs. Xeloda is a pro-drug of 5FU. It converts to 5FU in the liver. 5FU is older than Xeloda, so it costs less. Xeloda is more convenient for the patient because it's a pill that you can take at home. 5FU is done through IV.

You further wrote:

I agree with your assessment. I think she pulled those numbers out of thin air to sell you on her treatment plan. I doubt she can produce any solid evidence to validate her claim. By solid evidence I mean published, peer-reviewed medical studies.

That said, I think she is right to recommend a more aggressive treatment that combines radiation and chemo. 5 positive nodes put your wife at a high risk of recurrence.