Thank you for posting all of this interesting information.  You've done a lot of research.  My mom is also being treated at Sloan Kettering and I also have to say that her doctor is not very "creative" with different treatment options.  We've mentioned a few ideas to him but for now he seems to want to stick to the standard care therapies.  We did consult with Dr. Bruchner of Bruchner Oncology in NYC who has a great track record with CC patients and uses various treatment therapies tailored to individual patients.  Unfortunately, he is not covered by my parents' insurance so mom couldn't be treated by him.  I assume that you live in NYC area, so if you're looking for another opinion, this may be a good option. 
Thanks again for posting your research and all the best to you mom.

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(15 replies, posted in Chemotherapy)

Hi Kate,
My family and I are also from Poland (Stalowa Wola)  but now live in the United States.  My mom who is 56 has been fighting CC for the past 5 months.  As Lainy has said, Gemzar is usually administered with another drug such as Cicplatin.  There are other options and combinations though.  My mom has been tolerating this combo well but I know that the doctors give her nausea medications, as well as steroids for the few days after her treatment.  Also, I would  suggest that you listen to this webinar http://www.cholangiocarcinoma.org/treatment.htm  that took place several weeks ago.  As you scroll down, it's the second one titled "Review of Chemotherapy Treatment in Bile Duct Cancer". 
All the best to your mom.

Hi Maryjo,
I am sure that you're going to get much more knowledgable advice from other members soon but I will gladly share my experience with you meanwhile.  My mom has inoperable cholangiocarcinoma and has just finished her series of chemo.  They did a CT scan right after and found that none of the tumors on her liver have grown in the last four months, which her oncologist considered to be good news.  Because she did well on the chemo, he wanted her to start another series in hopes that it will continue keeping the cancer at bay or maybe even shrink some of the tumors.   So she just finished her first two weeks of the new treatment and feels great.
I would advise you to talk to your husband's oncologist to ask for his plan for the future. 
Stay strong,
Monika

Lainy,Jim-  thanks so much for your thoughts and advice.  Gavin, mom is taking Spironolactone and has been on it for almost two weeks.  Her tummy doesn't seem to be getting any smaller, although she says it's softer and yes, her ankles are a little swollen as well.  I'm thinking that she should give it maybe another week or so and then ask the doctor for another medication, as I see that there are a few out there..

This is a very comprehensive, alphabetical list of most, if not all, supplementary treatments (mostly herbs) for all types of cancers.  Each entry includes effectiveness, studies done and any contraindications. 
http://www.mskcc.org/mskcc/html/58481.cfm

Hi everyone,
Last time I posted, we were looking for a facility for mom's treatment in NJ.  Just a quick recap-  she is 56 years old and was originally diagnosed with lung cancer with mets to the liver (no primary tumor) by Hackensack Medical Center in NJ (based on their analysis of the biopsied lesions on the liver)  but after seeking another opinion from Sloan Kettering, she was diagnosed with cholangiocarcinoma (although they are not 100 % positive, since there is no primary tumor).   Resection was ruled out at this point, because there are over 20 small mets all over the liver and  some lymph node involvement.  We then sought another opinion from Dr. Schwartz in NYC who confirmed that surgery is not an option right now.  We also met with Dr. Bruckner in NYC, since we heard so many great things about him.  Unfortunately, mom can't be treated by him, because parents have Blue Cross HMO which does not allow treatment outside of network.  The consultation with him was very productive, since he is so knowledgable and  provided us with great amount of specialized information and shared his treatment plan with her current oncologist.  By the way, both doctors confirmed the diagnosis of cholangiocarcinoma with no primary tumor.  So, in the end she went with Sloan Kettering, since they have an outpatient facility in NJ that is covered by their insurance.
So, now mom has finished six treatments with of gem/cis  with two weeks on and one week off.  She did very well during her treatment and even worked part time.  Her recent ct scan showed no new growth in the past four months, and the doctor called her disease "stable" and was pleased with the results.  He actually said that since her initial CT scan was done over a month before the start of treatment there could have been growth between that time and the beginning of treatment, which means that there could have been some shrinkage of lesions, as well.  Another good news was that her ca 19-9 numbers came down to 200's from over 1300 at the beginning of the treatment.  We are obviously so happy about all this  good news.  Seeing how well mom is taking to the treatment, the doctor wants her to continue with it and after a three week break, she just started another series of 6 gem/cyc treatments. 
I should also mention that dad has mom on many alternative supplements (mushrooms, herbs, juicing, etc)  that he took a very long time researching and that could be helping her as well, but we will never know if it's that or the chemo or the combination.  Sloan Kettering website has a wonderful database of pretty much all alternative cancer treatments and what research has been done on them, whether they work or not and if they may interfere with chemo.  It's definitely worth checking out.  Here's the link http://www.mskcc.org/mskcc/html/11570.cfm
The only thing that has us concerned is that her stomach is more bloated than usual and the doctor said that she is probably retaining fluids.  He did not mention ascites and I have to email him to ask about that but he did prescribe some medication to help with it, which I assume is a diuretic.  Unfortunately, it's not working right now (although mom said that her belly is getting softer, just not smaller).  Any advice on that front?   How long does it usually take for the effects to kick in?  Should I ask for a different type of medication for her?
Sorry for this post being so long but I had a lot to share!
I have found this website so helpful through this difficult time and hope that parts of my post my help someone, too.

Hello,

My mom got diagnosed with cholangiocarcinoma recently.  Although they could not find a tumor anywhere besides lesions on the liver the pathology "favored" the bile duct.  She went through a CT scan, MRI, PET scan, EUS... the works.  Nothing found anywhere.... The 1st Cancer Center thought it was lung but Sloan Kettering disagreed and said bile duct.  With two centers disagreeing, I think I want to get a 3rd opinion.  The doc at Sloan sound knowledgeable but is basically following the standard chemo of Gemzar/Cisplatin. He said liver resection/transplant is not an option and said whenever the liver is impacted it's in the blood and it will come back.  After reading some posts, it appears that some people do in fact get surgery done on the liver so I'm wondering why he's just against it? And is the surgery even a better option than chemo? 

So to my question, has anyone had good experience with an oncologist for cholangio in the NJ/NY area?