wileygirl18

Chemo is not effective for cholagniocarcinoma, period. So says the American Cancer Society and many other sites. I would just type in Klatskins tumor and start reading and following the links.
Wonderful about no lymph node involvement and clean margins.!!!

Any ONC you go to will go with the standard regimen of Gemcidabine and Cisplatin which is just for general abdominal cancers. There is nothing specific for CC. and the gem/cis chemo is only effective in 20% of cases. And then there are the side effects.

You might want to check out greenbridgemed.com to find out about an alternative treatment that is working for my husband who refused chemo.

I wish your Mom all the best. Sounds like she has a lot of life in her yet. You always have to weigh quantity of life with quality of life.

jean

My husband is going for his 7th internal/external biliary drain change on Friday. They either stop draining or they leak, both of which you have described. They are a royal pain, but they do help the Bilirubin count to lower.
I would not use Tegaderm even though I love the stuff, because it allows no air in. We just use a gauze sponge and tape. I am always worried about his skin breaking down.
Flushing has caused us no end of problems. Either it caused it to leak faster, or it would just come out of the insertion site. Our Interventional Radiologist said to stop flushing since it was draining well without it. But it is in the nature of these biliary drains to either clog or leak or both. It is easy for them to be accidentally pulled out of position just by moving around.
Does your husband have a Statlock and a stopcock? They had to put both on David just to stop it from moving. He drains about 250cc’s a day. Anything else drains internally to the small intestine.
The Internet is your best source of information if you have the time to look.
Best of luck to you and your husband.
Jean

My husband had a bile duct resection where they were able to get rid of his tumor entirely. Unfortunately, one of the common complications of this surgery is a stricture(narrowing) where the surgeon joins up the two ends of the bile duct. Three months after the surgery, David started itching terribly and having sweats and chills. His Bilirubin went up to 8.1 within two weeks. He was normal prior to that.
It was decided that he needed an internal/external biliary drain put in. . It was explained to him that they would keep changing the catheter increasing the size of it every time. They started off with a #10 and now he has a #14. This is the largest it gets. Hopefully, they can remove it entirely in August and his bile duct will be able to once again work normally.
Problems: The drains either leak or stop draining. He is going in for his 7th one in 4 months tomorrow.
He has a drainage bag we have named Sam. This will be the 7th SAM. Yikes. It is a royal pain, but it did bring down the Bilirubin to 3.9 before it started to go up again. Right now David is very jaundiced and his Bilirubin is over 12; however he feels good! Go figure. He had a PET scan which showed no cancer even though 5 months ago he had tumors in his omentum. He just had an MRCP which also showed no biliary obstruction of any kind. The doctors are baffled.
We are hoping that the Interventional Radiologist, NO TECH, can find out what is wrong.
Dr. Lee says that people move and the drain does not so it can easily be pulled out of position in the small intestine. It is frustrating. It is scary.
David had a liver transplant in 2003 due to PSC so they are super careful with him.
Your husband has problems we have not encountered yet. I wish him all the best. This is a
lousy disease made moreso by the lack of knowledge on how to treat it.
Chemo is not effective even though they push it. Sad. David is on CBD and has been since his surgery when they told us his CC had metastasized to his omentum. Maybe that has gotten rid of the nodules, maybe not. We are cautiously optimistic, but extremely concerned about his high liver function tests.