Eli

Hi Michelle,

Welcome to the forum and sorry that you had to find us. I am a fellow Ontarian. My wife and I live in Ottawa. My wife is the one with CC. She got diagnosed last April, a few days after she turned 44. She is being treated at The Ottawa Hospital. She was very fortunate that she was able to have surgery. (sounds unnatural to say “fortunate” about CC patient)

You asked how long a person can stay on the Gemcitabine/Carboplatin chemo. The following study says that patients completed up to 9 cycles.

Gemcitabine with carboplatin for advanced biliary tract cancers
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028583/

For the reference, my wife completed 6 cycles of Gemcitabine/Cisplatin after her surgery. The last three cycles were very tough. We debated quitting chemo after each cycle. Keep in mind, carboplatin is supposed to be far less toxic than cisplatin. Fingers crossed that your brother will be able to complete as many cycles as his doctors deem necessary.

The fact that both you and your brother got cancer at the young age of 38 makes you strong candidates for genetic testing. Certain inherited genetic mutations can be responsible for both breast cancer and CC. If you or your brother have kids, this is something you might want to consider doing for their sake. Genetic testing is covered by OHIP.

Best wishes,
Eli

Pam,

I’m so glad you got the good news about the mapping. Now let’s hope that May 16th procedure kills the tumor, to make the surgery possible. I will keep everything crossed for Lauren.

My very best wishes to both of you.

Eli

Hi Vicky,

Welcome to the site and sorry that you had to find your way here.

You asked about the low blood counts. You didn’t mention which ones are the problem. Is it neutrophils (white blood cells) or platelets?

My wife completed 6 cycles of Gemcitabine/Cisplatin. The total of 12 chemo sessions. Her neutrophils dropped too low right after the first cycle. Our oncologist put her on Neupogen shots to keep her neutrophil counts up. She did 10 Neupogen injections in each chemo cycle. 3 injections after the first session of the cycle. 7 injections after the second session. Thanks to Neupogen, my wife completed all 6 cycles without interruptions.

Neulasta is a similar drug to Neupogen. Its effect lasts for a longer period of time, so it requires fewer injections than Neupogen. Ask your oncologist if one of these drugs is right for your mom.

Best wishes to you and your mom,
Eli

A point of clarification:

A very small number of CC cases can be caused by inherited genetic disorders. See this paper:

Hereditary Pancreatic and Hepatobiliary Cancers
http://www.hindawi.com/journals/ijso/2011/154673/

Jump to section 3.2.1. It talks about three rare, inherited, genetic disorders that may be responsible for CC:

Lynch Syndrome (HNPCC)
Muir-Torre Syndrome
Bile salt export pump deficiency

That said, the vast majority of CC cases are not inherited.

As I mentioned before, my wife and I had a consultation in the genetic clinic. You can read about our experience here:

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7960

We are still waiting for genetic test results.

Percy, thanks for doing the housekeeping!

A word of caution about the second link:

Is preoperative histological diagnosis necessary for cholangiocarcinoma?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504384/

The article was published in 2008. The authors reviewed the literature up to July 2007. They reached the conclusion that positive biopsy is not required to diagnose extrahepatic CC. That was before the emergence of SpyGlass exam. I’m not sure if SpyGlass biopsy is accurate enough to change the conclusion reached in the article.

Here’s another good article closely related to the other two.

Endoscopic diagnosis of extrahepatic bile duct carcinoma: Advances and current limitations
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3100496/

EDIT:

Here’s another article that looks at the issue of biopsy before surgery. The section on extrahepatic CC reviews several benign strictures that may look very similar to ECC.

Is preoperative histological diagnosis necessary before referral to major surgery for cholangiocarcinoma?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504385

Note: “histological diagnosis” refers to positive biopsy that firmly confirms CC.

Flyboy, take a look at this discussion:

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8163

The situation is somewhat similar to yours. All tests are negative, yet the size of the stricture has increased.

Hi Flyboy,

We discussed exploratory surgery with my wife’s surgeon. He dismissed the idea.

If I recall his comments correctly:

1. If the tumor sits inside the bile duct, the surgeon cannot access it. Cutting the duct is not an option during exploratory surgery.

2. If the tumor is visible outside the bile duct, the surgeon cannot reliably distinguish benign from malignant by simply eyeballing the tumor.

3. They can’t do a full biopsy exam in the middle of an exploratory surgery. What they can do is called “frozen section” biopsy. The surgeon obtains a small sample of the tissue. The pathologist freezes the sample and takes a very thin slice (a few microns). Frozen section biopsy is not 100% reliable.

We agreed to do Whipple without a firm diagnosis. The firm CC diagnosis was established by the full pathology exam after the surgery.

Susie, wishing you the best. Benign cyst and quick recovery. I will keep everything crossed for the best possible outcome.