Sounds similar to mine in that it wasn't spread to the liver at all. Just one single mass in the bile duct pinching it off. I had a plastic stent put in and surgery 2 weeks after finding the mass.  I was stage IIB, I think III and IV are when there are lymph nodes involved and it has gotten to the liver. I agree with everyone, 2nd and 3rd opinions are key. I only went with the one because when my wife asked the doctor how I was going to leave the hospital, he said I was going to walk out on my own 2 feet. Definite vote of confidence for sure. Sloan Kettering, Dr. Jarnagin was my surgeon and who I saw last month. Best of luck, use us as resources and as usual, we will help however we can!

Yep, still fishing. Repairing rods and selling on Ebay for fun also. Getting better at the repairs each time I try one! Thanks for the kind words too. Hoping I can make everyone smile a bit today and of course run thru other posts!

I owe some apologies to everyone for not posting as much and for taking as long to post this. on 9/14 it will be my 5 year resection anniversary (and as an aside, it's also the 5 year anniversary of the Big Four (Anthrax, Megadeth, Slayer, and METALLICA) playing at Yankee Stadium in the Bronx. I asked the doc if I could go after the surgery and he suggested that it probably wouldn't be a good idea... smile ). I flew to NY with my daughter on 8/9/16 and had an office visit with Dr. Jarnagin to review all of my films.  I wrote the following on FB on 8/11 which was the day before my 21st wedding anniversary. Life is good, lucky to be here!!

"Cancer? What Cancer?? I'm sitting here in NY at my inlaws on the 26th floor balcony in the North Shore Towers overlooking the golf course and Grand Central Parkway typing this with the utmost humility and sincere gratitude for everyone who has supported me, said prayers, good thoughts, positive comments online, and everything else that has transpired over the past 5 years. As you know, cancer in 2011, it came back in May 2015 and we did more chemo and maybe, just maybe, some holistic medicinal herbs here and there.… I had 3 scans over the past 6-9 months and all said "No evidence of disease". All of my doctors in Florida said they don't think I have any more cancer. I decided to take a trip to Sloan Kettering and see my surgeon, Dr. Bill Jarnagin, who did my original surgery. It's official from multiple sources, I DON'T HAVE ANY MORE CANCER IN ME!!!! I'm running with that for sure!! That being said, Sydney Hampton and I are going to go to see Matilda on broadway tonite and are headed to the city shortly to hit a few museums along the way. Again, thank you to everyone, and mean this with more sincerity that can ever be expressed. Support and positivity are absolutely necessary when anyone goes through this. Any negativity is not going to help at all. Until the next post!!!!"

Of course, thanks goes out to this great community of people who are going through the same thing. Fight the good fight, always be positive! There's no place for negativity, it doesn't help anything and puts you in a bad mood also. Best of luck to everyone.


(6 replies, posted in General Discussion)

So everyone knows, I had genetic sequencing done this past May at Sloan Kettering. They are working on a CC database of gene mutations so I was asked if I wanted to participate and that there was no cost for the genetic testing.  No bill to me or to my insurance company.

I don't know how it would work with non-patients, but I believe that they would still be interested in getting as many patients in the database as  possible. Dr. Maeve Lowry is the oncologist I'm seeing up there who is involved in the database as well as other CC phase 1 trials.  Office phone is 646-888-4543. Contact them if you have interest in the database or the genetic profiling.


(3 replies, posted in General Discussion)

Haven't posted in quite a while, so I'll fill everyone in.  6 months ago in April, I had another experience with what we thought was a stricture so my local Interventional Radiologist put a tube in to try to get the bilirubin levels down (I was at 12.0 I believe) and they wouldn't go lower than 5.0. After a week stay in the hospital and discussions with my IR and Sloan Kettering, it was decided that I would go to NY for scans/treatment. However, we postponed the trip north until AFTER my birthday on the 25th, I had a concert to attend with my son (Breaking Benjamin, Papa Roach, Godsmack, and Slipknot).

Got to NY on Monday the 27th of April and had a CT scan done and was literally prepped for a procedure to swap out the tube when they said I needed to get an ultrasound and MRI done. Pulled me out and went in the next day for the scans, MRI detected something, Ultrasound showed something pressing on the portal vein. Original tube was left in, they added a second one to relieve some of the pressure on the portal vein and it also worked to bring down the bilirubin. Unfortunately, the 2nd tube was between my ribs so the wife says I was quite entertaining when on the Oxycodone to stop the pain. Didn't relieve it too much, and we decided to get 2 metal stents installed which was done on a Friday.  When they placed the stents, they also took a biopsy of the mass that was present and it was confirmed for Cholangiocarcinoma. 

The tumor was smaller than my original one, but literally in the exact same location (albeit on the opposite side of my body because the liver grew back on my left) at the split of the bile ducts just inside the liver.  I set up an appointment with Dr. Maeve Lowry, an oncologist at Sloan, and we decided on a treatment plan (Cisplatin and Gemzar, same as original adjuvant surgery).  I've been trying to follow the 2 weeks on, one week off, but am having a very hard time with platelets recovering.  For example, today my platelets were 44 one week after chemo last Monday.  So, not only am I having a hard time reproducing platelets, the pressure on the portal vein has caused my spleen to get enlarged and apparently, the spleen is a 'trap' for platelets. I'm' getting hit from both sides!!!!

4 weeks ago I had a slight fever, but it went up to 101.8 so off to the hospital we went. No infections or bacteria whatsoever but my white blood cells were 1.5 and they should be a minimum of 4.2 I believe. Red blood cells were also low, so I got 2 units of blood (my first official blood transfusion!) and was released on Tuesday after a 4 day stay.

Slight silver lining:  August 28 I had an MRI done and the tumor has actually shrank from the chemo. I'm a non-surgical candidate at this point (2nd opinion from Columbia Presbyterian in NY concurred with my surgeon at Sloan - I would basically kick the bucket on the operating table) so it is indefinite chemo at this point. My genetic profiling was done also at Sloan and there are 2 genes with a mutation, one of which is present in 22% of CC patients. The trials out there I am ineligible for because (and this is the funny part) the tumor is too small. Ironic, huh? I guess I'd rather have a smaller tumor and no trial participation versus a large tumor and being in a trial, right?

Anyway, that's my story and you're all updated! I'll do a better job of posting and keeping everyone up to speed also!


(34 replies, posted in Clinical Trials)

Quick question: How do you tell what mutation you have? I read FGFR in the above posts. Genetic testing? Don't know if you've read of the NIH starting the cancer gene mapping trials but Sloan Kettering will do it and it costs you nothing out of your pocket nor does it cost your insurance anything. They are doing it to try to focus on those with mutations in the same gene to avoid trials of drugs on certain mutations that are not common...

Hi everyone. On the positive side, 4.4 years cancer free and most recent CT scans still confirm this. However, on the negative side, I  have another internal/external biliary drain installed and will have a PICC line put in tomorrow to go on IV antibiotics while we figure out what to do from here.

I have had 3 different occurrences of a stricture/astimosis over the past 15 months, one Feb. last year thru May, tube pulled and lasted until  end of September. September through December same as first time and it lasted until last Friday the 3rd of April when I got the drain installed. In each of the first 2 occurrences, we did a balloon angioplasty type procedure to stretch the bile duct while installing a larger tube size each time and after 3 sessions, reduced the tube size over a 4-6 week period. We did capping trials and everything was working so the drain was pulled. Lasted about 4 months the first time, a little over 3 months this time.

Anyone have similar experiences with this? I have no right lobe of the liver, the new bile duct connection is in the center of my chest and the remaining left lobe grew to my left side. I'm hoping to hear from Dr. Jarnagin from MSKCC tomorrow but we'll probably be talking to numerous people to get options and ideas as to what can be done at this point. My local interventional radiologist is basically saying there isn't any more he can do until we have a plan of attack from other professionals as he has tried all he knows he can try, and I don't disagree with him. Stents? Long term tube with balloon? Please let me know your thoughts and experiences, I look forward to sharing them with you all!


(394 replies, posted in Introductions!)

Heh, bile duct thinner, yeah right. I meant bile thinner. Apparently it is polar bear bile, they never get liver/bile duct cancer so it's synthesized and utilized now...


(394 replies, posted in Introductions!)

The radiation was one of those things similar to chemo... "we don't know if this will help, we don't know if this will hurt." so I decided to run with it.  The only downfall so far is the astimosis of the new connection point. The narrowing sucks. I can always tell if it is starting up again, I'm very sensitive to elevated bilirubin, so I start to itch and know something's up. Floating stools that are a lot more tan versus darker color (nice water cooler talk, huh?). I'm on a bile duct thinner now that is a 2x per day pill but my doctor says only 1x per day is OK. It's $250 per month and I'm on a high deductible plan so I'm trying to stretch that pill but may have to start the 2x per day if the itching starts up again... Best of luck with the port, when I had the PIC line put in for IV antibiotics, it was a snap and really helped. It let me go home and do the antibiotics myself instead of 3x per day going somewhere to get an infusion...


(394 replies, posted in Introductions!)

Just read your whole thread, heck of a story. Very sorry to hear about the recurrence. My story is very similar to yours. very small tumor but on the bile duct, took right lobe of liver, half of left, gall bladder, and all of the bile duct and reattached small intestine to the remaining part of the bile duct. Unlike you, I did do the adjuvant chemo and radiation (Gem/Cis). I was told we don't know if it will help or hurt, and I was 40 at the time so figured I could handle it. My surgery was on 9/14/11 and I'm still clean. I have had 2 astimosis strictures with tubes/balloons to expand the astimosis. First time last Feb it worked for 5 months. The tube was pulled this past December and so far so good.

Regarding chemo, Never had any nausea due to the stuff they give you. It's a 5 hour ordeal for Gem/Cis. 30 minutes of steroid and anti nausea, 30 minutes of Gemzar, 1 hour and 1000 ml of Potassium and magnesium, 1 hour of Cisplatin, and 1 more hour of Potassium and Magnesium again. You go to the bathroom every freaking 15 minutes after about an hour... the steroids jack you up too, I couldn't get to sleep until 2 or 3 in the morning so I'd go up the road to the bridge and do some night fishing for fun. I did all of my chemo (5 cycles) via IV only, didn't do a port. Each individual is different, I had good veins probably due to the weight lifting I have typically done in my past. 

Please don't hesitate to contact with any questions. This is a great site and very supportive. I'm a slacker, haven't been on in a while so I'm trying to catch up!!


(8 replies, posted in General Discussion)

Forgot to post, got the PICC line out the 29th of December. Tube free for a couple of weeks now! It's allowed me to start running (and by running, I mean jogging slowly and plodding along since I'm so out of cardio shape) and get back to pushups and exercising. If only I could figure out how to control what I eat...... smile


(22 replies, posted in General Discussion)

Congrats! I'm 3 years and 4 months in, and have very similar results as you. Clean margins, no lymph node involvement, did chemo/radiation though.  I have the same 'small' hernia (no idea the actual size, my wife says it is the alien coming out of my stomach just below the ribcage) but I'm stubborn and continue to run/work out and do stuff around the house, just very cognizant of how I lift, always keep my core tight whereas I never used to think about that.  It appears to me that early detection and clean margins/no lymph node involvement is the best opportunity for lack of recurrence.  Unfortunately, our cases are few and far between because CC is so rare and hard to diagnose. Also, From the time I had the 'mass' discovered (August 29 2011) until my actual surgery (September 14, 2011) was a little over 2 weeks. Probably unheard of, but again, I got lucky with that too. Best of luck to you and to everyone else dealing with this cancer.....


(8 replies, posted in General Discussion)

Well, blood work from Monday showed everything OK so they pulled out the biliary drain! Officially passed the 2 week 'capping trial' so I have 1 of 2 tubes out of me at long last! PICC line still in, going to continue the IV antibiotics until Monday evening and see the doctor Tuesday and the last tube should be out!

Probably should have backed off of the bile thinner for a couple of days prior to the tube coming out... I'm leaking like a sieve right now, but hey, better than a tube in you, right?


(190 replies, posted in General Discussion)

Very sorry to hear this. Growing up in Ft. Lauderdale, I know the boat parade was always entertaining and beautiful. Glad to hear that Ben was able to see it this year. All my best to both of you in this most difficult of times....

I believe I just got a script for the Ursodial.  Any side effects for that? I got it filled but haven't taken it yet, will probably start tomorrow.  Capping trial going on now, biliary drain is pulled out of the bile duct, no bag for drainage,  just the pic line for IV antibiotics. Another procedure next week to go from 12 French to 10 French tube size, then hopefully get it pulled the following week... Getting there!

Pat, it appears that you were almost exactly 180 degrees the opposite of me! I was at the time also working for a great company and was back at it Mid-December while I did a little throughout the time I was recovering in NY from Sept. to Nov. I did need the two seams from what I understand, and there are still staples in me as well.  My liver is also an amorphous shape and I have fun with the CT techs every time I go. "Everything in the right place?" I ask... "Well, you seem to have a very large spleen". Me: "That's not a spleen, it's my liver" big circle eyes from CT tech and I get a laugh out of it. I agree with the blessing you mention, I'm right there with you only a little less time. Puts life in a different perspective, doesn't it?

Thanks for the post. Main question I have, what portion of the liver was resected and where's your new 'connection point'. My entire right lobe and half of the left was resected. The liver grew back under the heart and intestines moved up to fill the space where my original liver was. That being said, the small intestine used for the new bile duct runs right up the middle of my chest and connects to the edge of the resected liver on the left side of my body, does that make sense? Clear as mud? smile Anyway, I, like you, will have a couple/few drinks once a week, sometimes 2. but not when I have the biliary drain stuck thru the liver!! Regarding true ID of a bile duct, who the heck knows! I did find this study: which puts it at 3.67 mm +/- .03mm so I'm leaning towards the 3-4mm range.  I didn't have any pain, but the tan floating stool and itching from higher bilirubin levels was the giveaway.  I unfortunately have a slight hernia right in the middle of the chest from about the turn of the scar at the bellybutton up to the start of the incision.  My wife calls it the alien as it bumps out and I can't really pull it back even when holding in the stomach.  It may have been caused from my weight lifting that I did continue after the surgery and I was sufficiently recovered, but not as much of late. Silver lining to this situation, can't digest any fat as the bile is draining to the bag still, so I'm down about 15-18 lbs. to a svelte 206... I guess I still have decent looking arms because every nurse I deal with makes a comment and if you use the normal blood pressure cuff at the hospital it pops off (which, if you ask me, is pretty cool!). Still interested to hear anyone else who has gone thru this and thanks again Pat for sharing your experience/history. It was very helpful for sure for me as well as others. I'm almost thru this, and next week Wednesday is the capping trial so if everything is flowing OK, I'll get the tube out in a few weeks but will then have to really watch what I eat because the fat digestion system will be TURNED BACK ON!!!

Last October was the Bat Mitzvah that we are almost done paying for!! Time certainly flies! My son just turned 16, we got him his first car, Infiniti G35, 2005 with 55k miles, should last him quite a while...

Hi everyone, been quite a while since I posted, and I apologize for that. As you may know, this past Feb. I had the scar tissue narrow at my new bile duct connection and went to Sloan Kettering for the initial bile drain procedure as they knew my anatomy. I did all of the angioplasty procedures here in Sarasota (great Interventional Radiologist, Dr. Scott Perrin, can't say enough good things about him) and after about 3 months, the drain was pulled and everything worked fine.

Around end of Sept/early Oct. this year, same symptoms started to come back, subsequent blood work (elevated liver enzymes, etc.) and CT scan showed narrowing again. I had Dr. Perrin get in touch with Dr. Brown at Sloan (Interventional radiologist up there) to discuss the angioplasty procedure they do and her comment was that they inflate the balloon and 'go get a cup of coffee, come back in 10-15 minutes, and then deflate the balloon'.   I subsequently found out that in February, Dr. Perrin was only leaving the balloon inflated for about 2-3 minutes.  He revised his procedure to follow Dr. Brown's recommendations, initially used a 10mm balloon (recall the inside diameter of a typical bile duct is roughly 3mm) for 10 minutes, tried to use the 12mm but it kept slipping through into the new bile duct.  2nd procedure did 10 minutes of 10mm, then an additional 10 minutes of 12mm balloon. I had my last procedure last week Wednesday with the 12mm balloon and that should be the last of the ballooning.

Unfortunately, I kept getting fevers. I guess every time you prod around and move tubes thru the liver, crap is turned loose and you fight off the infections.  I was in the hospital from last week Wednesday 2pm thru Thursday 3pm, home for Thanksgiving dinner, and then another fever so around midnight back in the hospital and stayed thru Sunday. I got another tube sticking out of me, they put in a PIC line in my right arm so I can give myself the IV antibiotics at home (Zosyn, IV for Flagyl and Cipro I believe) 3 times a day.  I go back in this Wednesday to start the capping trial and reduce the current bile drain tube from 14 French to 12 French and pull it back to let everything flow as it normally would to see if everything is working OK.  The following Wednesday, same thing, 12 French to 10 French, and the week after if everything is OK, they will pull the drain out by the 24th, a great Hanukkah gift for the last night...

Anyway, now you all know what I do! Curious, has anyone else gone through the same or similar with the connection point of the new constructed bile duct to the existing portion of the bile duct that comes out of the liver?? Wanted to see if others have gone through the same thing...

Silver lining: bile duct scrapings in October, no recurrence anywhere and liver functions as of end of November are all in normal range too...


(32 replies, posted in General Discussion)

OK, I ended up being in the hospital until the 12th of March, something like 23 out of 26 days. But, I'm good now! I had a multitude of angioplasty type procedures, the last one having a 16 French tube installed. Biggest one they have. They couldn't just pull the tube out (too big) so every 2 weeks I went in for a drain tube downsizing. When the 16 French was in, it wasn't thru the scar tissue, so everything was flowing normally. They reduced to 14 French, it passed thru the scar tissue, no issues, 12 French passed thru but ended up with a slight infection, was growing different germs than what my antibiotics killed, switched antibiotics and attached an external drain. 2 weeks later, went in for another downsizing to a 10 French which didn't pass thru the scar tissue and was called a 'capping trial' since there wasn't an external bag either. I did bloodwork, but my liver enzymes were up, so in for another tube downsizing to an 8 French (smallest one they make for biliary drains). Doc thought the 10 French tube was affecting the liver function, and ultimately it was.  I did bloodwork Tuesday after the procedure (which was on Thursday the week before) and my liver functions were down but not quite in the normal range. Waited until Friday (this would be last Friday) to do bloodwork, results Monday came back normal, so I ran as fast as I could to the hospital where Dr. Perrin (interventional radiologist at Sarasota Memorial) pulled that freaking tube out of me!!! So... now I just have a bandage over the 'hole' that is healing. I do have some serious irritation due to all of the medical tape I was using but I'm wiping the area with prep wipes to reduce irritation. It isn't draining any more (when he first took the tube out, bile practically shot out of my abdomen!) which is a good sign, I think Monday I can start the exercise process again!

Anyway, there's the long and short of it. Oh yeah, at Sloan they did do bile duct scrapings and everything came back negative so there is no recurrence at all. If this issue happens again, which they told me prior to the surgery that it could, I can deal with it no problem! The alternative is way worse for sure!


(23 replies, posted in General Discussion)

I'm a similar case as LisaS's. Dark urine, every other bowel movement was light, and man was I itching (only had a high of 3.5 on bilirubin though).  Bloodwork Thursday, Friday Dr. called and said you need to get in to do more bloodwork, did it, but never got the results. Sunday at 2am checked in to hospital on doctor's orders (he knew something was up, still no confirmation) and they did a CT and Ultrasound on Sunday but saw nothing. Monday afternoon, ERCP and a stent and voila! no symptoms any more.  However, there was a 0.5cm x 0.5cm x 0.75cm mass on my bile duct. They pulled samples, but they came back 'atypical suspicious fibrous cells'. I was on a plane to NY on Labor day of '11, 4 days after the pathology came back. We originally had the biopsies going to Harvard but had them redirected to Sloan Kettering. Met with Dr. Weiss and Dr. Jarnagin at Sloan Kettering, both said even if biopsies came back negative, they wouldn't believe them. Wasn't officially diagnosed until 5 days after resection.

And I didn't have a lick of pain either, probably because of the small size of the tumor. At the end, besides the itching, dark urine, and stool issues, everything I ate would cause me to be nauseous, probably because of the elevated bilirubin levels. I'm officially 2 years and 8 months clean. Posting on my recent 'astimosis due to scar tissue' travails in another post momentarily...


(32 replies, posted in General Discussion)

Well, procedure did OK, but I blew 4 Fevers over 5 days just a shakin' and a bakin'... no fun. On 2/24 they exchanged the 10 French drain to a 12 French and plugged it the next day to drain internally. I was discharged 2/26 and flew home 2/28. 3/1 went to Sarasota Memorial with a fever. IV antibiotics and believe it or not they let me go home... hour later and one ambulance ride, I checked back in with a high fever. IV antibiotics, blood cultures, bile cultures, haven't had a fever since late Saturday. Monday they replaced my drain and did 1of 3 angioplasty procedures. Put in a 14 French tube, a bit larger. Haven't had any leaking since Monday (other drain was leaking like a sieve) and may get out of here tomorrow... definitely sick of hospitals... been in one 14 of the past 16 days... but hey, beats the alternative, doesn't it?? Negative biopsy is the best result, I can deal with the scar tissue...


(32 replies, posted in General Discussion)

Procedure done. A little sore at the entry point where it goes through the abs. I'm sure it will be more sore as the night goes on. There's a drain bag attached for now, eventually they will cap it and make everything drain to inside. I think in 2-3 days I go back under for the angioplasty part, then I can go home for a few weeks.  All good so far! And, I got to eat!!


(32 replies, posted in General Discussion)

Well, I'm in NY, it was 20 yesterday, 32 today, and I'm supposed to be getting this procedure done in a half hour or so but no one has come to grab me. In Sloan Kettering in NY room 1631B if anyone is in the neighborhood!! Will post some more when I get out!


(32 replies, posted in General Discussion)

Yes, the bile duct is narrow... but not mine since they used my small intestine to make a new one!! I think the s=arring and narrowing is at the connection point of the new bile duct to the liver so that is where they will 'balloon' things...