Like Gavin's dad, I immediately experienced jaundice and constant stomach dull pain in early April this year. I checked myself into MD Anderson of Orlando and was told that I had a bile duct blockage; they were unsuccessful in placing a stent thru the blockage which is why I ended up in MD Anderson Houston (better hospital & doctors).  After placing the stent in and doing a biopsy of tumor in my stomach lining, Dr. Vaunthey of MD Anderdon (im sure you saw him too) said that the cancer was inoperable and chemo was best course of action.

I did see Dr. Rosenburgy, GI oncology surgeon in Tampa, this past Friday for 2nd opinion, and he gave same recommendation; do the chemo. I did ask him about any possible radiation treatments and his response was that the tumors in my stomach lining can't be treated with radiation (he said radiating stomach lining is not straightforward like breast cancers or lungs) .  I'm still going to Mayo clinic anyways this upcoming Friday for 2nd opinion.  I called Mayo clinic on May 3rd for appointment and they scheduled me on 17th (2 weeks), which is why I went ahead and started chemo, I didn't want to keep waiting around.

Feel free to ask more questions at anytime,
Jason

I concur, 2-5 bilirubin is not significantly high, I suggest getting with a different oncologist.

Hey Carrie,

It sounds like Travis and I share a common path. I'm a 37 yr old married man with two girls (4 & 11), I was too recently diagnosed with stage 4 CC at MD Anderson Houston. The tumor started in my bile duct and spread to my stomach & lymph nodes.  I saw Dr. Shroff (may 1st) as well who recommended Gem/Cis, however since I only have one kidney, my local oncologist here in Orlando (Dr. Zakari of Florida Hospital) decided to change the chemo combo from Gem/Cis to GEMOX (easier on my kidney).

I just started my 1st chemo last week. I will also be going to Mayo Jacksonville this Friday for 2nd opinion.

Yeah, I'm still learning this cancer, the terms and wordings, lots to learn. This website discussion board is incredible. Don't be shy to post messages & questions.

Feel free to personally to get a hold of me or my wife Jamie, thru private message here in discussion, good luck to u and Travis,
Jason

That's great Rain, please keep us in the loop.

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Thanks Galvin

My biggest concern is the blockage in the Y branch. How many time did the radiologist try to place the stent in? It took them 3 times to finally to get a stent thru my blockage at the Y branch.

Hang in there,
Jason

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Hey Carl,

I'm starting my first chemo starting tomorrow (GEMOX).

I feel like your wife is my fellow soldier, ready to battle thru this process.

Good luck!
Jason

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That's awesome, what chemo were you on? What type of cancer are you diagnosed with ? gallbladder carcinoma (GBC), intrahepatic cholangiocarcinoma (IHCC),  hilar cholangiocarcinoma (HCC), also known as a Klatskin tumor or extrahepatic cholangiocarcinoma(EHCC)?

Ok Tiff, will do.

Thanks again everyone for spending the time to post your replies.

So far, I have not been told that the cancer have spread to the liver.

Btw, interesting feedbacks that I'm getting from these posts about Dr. Kato of NY Presbyterian Columbia Hospital. I have heard of Dr John Chabot who works at same hospital (same place that Kato works at) that has performed surgeries that no else is willing to do.

Thanks again for the responses, incredible stuff.

It sounds like "targeted therapy combined with chemo" has had some success, going to read more about it.

Once again I appreciate all of your responses. Very powerful advice and stories.

This is really incredible to hear your stories and responses. Amazing, I feel a little LESS lonely now. You guys are the best. smile

Just an update as of today:

I saw Dr. Ahmed Zakari - Medical Director of Gastrointestinal Oncology at Florida Hospital. I felt comfortable with his introduction, he demonstrated his knowledge of Cholangiocarcinoma at great length. From what he can read from the radiology report, he thinks I have hilar cholangiocarcinoma (HCC), also known as a Klatskin tumor. So far radiologist can only found nodules in my stomach lining and the "blockage" in upper common bile duct, no where else (I will get the official results from MD Anderson).

Dr. Zakari is recommending that I go with "gemcitabine and oxaliplatin (GEMOX)," instead of the standard chemo treatment "gemcitabine/cisplatin." GEMOX will be easier on my kidney since I only have one. I start chemo either next Tuesday or Wednesday.

After reading thru your replies, I think I will continue to see that specialist next Friday for 2nd opinion, it can't hurt, right?

Cool, appreciate it

Your responses, this discussion & website is a blessing. I'm still learning everyday what this type of "Cholangiocarcinoma" cancer that I'm dealing with.

This discussion forum board is absolutely wonderful.

After experiencing jaundice and stomach pain for over a week, I checked myself into a local Orlando hospital's ER in early April 2013. After MRI and CAT scans, drs noticed bile duct obstruction. Utilizing ERCP (endoscopic procedure) and interventional radiology procedures (PTC), specialists were unable to placed a stent at the obstruction area and had to put in an external biliary drain. Drs were unable to identify the cause of the blockage but had serious suspicion that cancer was involved.

My wife and I then decided to fly out to the highly regarded MD Anderson of Houston for 2nd opinion from Dr. Jean-Nicholas Vauthey. Dr. Vauthey ended up admitting me to the hospital so they can attempt to install the stent & determine the cause of the blockage. After successful install of the stent and taking sample of very tiny "nodules" near my liver/abdominal area (peritoneal area) for biopsy, we were given the devastating news by Dr. Vauthey that I have been diagnosed with stage 4 CC. Dr. Vauthey is unfortunately unable to operate on me and the onsite oncologist is recommending chemotherapy (Gemcitabine & Cisplatin).

I'm 37 years old and happily married with two daughters (3 yrs & 11 yrs).

I would be grateful for any feedback or ideas on what the next step should be. I was wondering should I get 2nd opinions first before starting on chemo treatment? Maybe there's a chance that a different surgeon would do surgery? I also hear that Mayo Clinic offers more than just chemo treatments like radiation & photodynamic therapy.

As you can see, lots of thoughts/ideas running thru my head smile

-Jason