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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,
I concur, 2-5 bilirubin is not significantly high, I suggest getting with a different oncologist.
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,
That’s great Rain, please keep us in the loop.
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,
I’m starting my first chemo starting tomorrow (GEMOX).
I feel like your wife is my fellow soldier, ready to battle thru this process.
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)?May 6, 2013 at 12:23 am in reply to: 37 year old male diagnosed with stage 4 CC – welcoming any advice #71559
Ok Tiff, will do.May 5, 2013 at 3:10 pm in reply to: 37 year old male diagnosed with stage 4 CC – welcoming any advice #71556
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.May 4, 2013 at 4:00 pm in reply to: 37 year old male diagnosed with stage 4 CC – welcoming any advice #71550
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.May 4, 2013 at 3:53 pm in reply to: 37 year old male diagnosed with stage 4 CC – welcoming any advice #71549
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.May 4, 2013 at 1:52 am in reply to: 37 year old male diagnosed with stage 4 CC – welcoming any advice #71543
Once again I appreciate all of your responses. Very powerful advice and stories.May 3, 2013 at 10:15 pm in reply to: 37 year old male diagnosed with stage 4 CC – welcoming any advice #71536
This is really incredible to hear your stories and responses. Amazing, I feel a little LESS lonely now. You guys are the best.
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?May 3, 2013 at 5:54 pm in reply to: 37 year old male diagnosed with stage 4 CC – welcoming any advice #71530
Cool, appreciate it