1

(179 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...

2

(179 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...

3

(179 replies, posted in Introductions!)

Matt,
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!!

4

(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

5

(22 replies, posted in General Discussion)

Pat,
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.....

6

(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?

7

(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?

Pat,
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:  http://www.ncbi.nlm.nih.gov/pubmed/7338243 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...

13

(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!

14

(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...

15

(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...

16

(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!!

17

(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!

18

(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...

19

(22 replies, posted in Introductions!)

Dr. Jarnagin did my resection in 2011, he is good, all business, but good. great team around him as well, Kathy is also great. let me know if you have any questions. i have to go to Sloan this Monday and will be an inpatient for 3-4 days. if you are there, stop by to say hi!!

20

(4 replies, posted in Members' Cafe)

dr. Jarnagin at Sloan was my surgeon for resection, consult from Janjigian on chemo before I headed home...

21

(32 replies, posted in General Discussion)

it is sacrelige to call a beignet a donut, nay, heresey!! but yes, we ate them... and ate them... and ate them... and then ate king cake.... for breakfast, lunchndessert, and late nite snacks... we ate.....

22

(32 replies, posted in General Discussion)

What's up everyone! Long time no post... ok, bad news, last Monday urine started to get darker, itching started up again. Legit cause to freak out... bloodwork had elevated liver functions and biliruben 1.8 (i know, I'm a whiner with this low a level compared to most everyone else...). did CT Friday, scan showed no sign of recurrence (PS, that's the good news! 2.5 years now...) scan sent to Sloan Kettering, apparently scar tissue is closing the new bile duct (and the fact that 8 days in New Orleans eating a crap ton of fried food didn't help either) causing a stricture. I am headed to NY (great time of year for that) after my DC trip this weekend. instead of home Monday, 3am train from Union Station to Penn Station and taxi directly to ER where they admit me, do blood, and set up for an angioplasty type procedure with a baloon to stretch the scar tissue. they leave a stent in for 2-3 weeks where i can fly home and work, i fly back for removal and should be good to go... Question: this happen to anyone else????? normal occurrence??

The way I see it, just another bump in the road in this journey... Whatca think????

23

(14 replies, posted in Introductions!)

Tara,
Best of luck, if you are on schedule, Wednesday is the day for you... It's funny, seems all of the surgeon's do these on Wednesday. Mine was 9/14/11 on a Wednesday. It does sound like you have a great prognosis and we're all praying that there isn't any lymph node involvement. As Lisa mentioned, feel free to reach out to all of us with any questions that you may have and again, best of luck!

24

(5 replies, posted in Introductions!)

I had clean resections and a very small tumor (0.75cm x 0.75cm x 0.5cm) in the bile duct only but had 3/4 of the liver removed as well as the bile duct and gall bladder. I was in the same boat as you, clean margins, but what do you do regarding chemo? I ended up doing both Chemo and Radiation. Chemo was a combo of Gemzar and Cisplatin, 6 cycles (2 weeks on, one week off per cycle) and Radiation was 5 days a week, 5 weeks total. I finished Radiation in June of 2012 and have had 3 clean scans since. Hope this helps...

25

(50 replies, posted in Introductions!)

So sorry to read this thread and see how fast things went. My most sincere condolences on your loss.