1

(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!

2

(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...

3

(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...

4

(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!!

5

(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!

6

(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...

7

(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!!

8

(4 replies, posted in Members' Cafe)

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

9

(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.....

10

(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????

11

(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!

12

(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...

13

(50 replies, posted in Introductions!)

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

14

(23 replies, posted in Introductions!)

Hey Matt, like everyone said, sorry you had to find this site. I'm 42, was diagnosed after the resection surgery officially, but am 2 years cancer free as of 9/14/13. This web site is great and very informative. All of the moderators have a ton of insight and if you have a question, just post it and you'll get a helpful response.

Best of luck with your scans and in getting a game plan together. The game plan is probably the most important thing, knowing that you're doing something instead of just the waiting. Keep us updated!

15

(5 replies, posted in Good News / What's Working)

Well, I haven't been around the boards in a while, my apologies for sure. Saw Tiff in December during my unfortunate last trip to Huntsville as I switched jobs and am now not travelling for work any more. I'm selling homes for a luxury builder here in Sarasota, so anyone know someone interested in moving to Sarasota and wants to build a new house, let me know!  Curious about the stuff we build:  www.johncannonhomes.com will give you a good idea!

Scan results: "Stable Examination. findings are not suspicious for tumor recurrence or metastatic disease." Yeah baby!!! My 2 year anniversary was 9/14/13, how appropriate that it was on Yom Kippur, day of atonement and fasting. I haven't felt better and am doing great! Kids doing well in school, Bat Mitzvah on 10/19 for my daughter so the wife is FREAKIN' CRAZY right about now... But then again, she's amazing and doing everything coordination wise. I'll help, but she's the glue for sure with this event. Bonus this year, I get to eat! 2 years ago at my son's Bar Mitzvah is when all of this started for me. I should be able to enjoy myself a bit more this time around!

Hope everyone else is persevering, has positive vibes and maintains hope! Positive attitude is a must! I stopped by the Chemo wing at my oncology appointment today to say hi to the nurses. They were all very happy to see me, which you would expect when someone has the positive experience I have had so far. Grateful is an understatement for sure... Great touching base, will be back more frequently if at all possible!!

2 year scan: "Stable Examination. findings are not suspicious for tumor recurrence or metastatic disease." Yeah baby!!! Will post in Good News also with more details...

17

(14 replies, posted in Good News / What's Working)

Fantastic news!! Great to hear!

18

(10 replies, posted in Members' Cafe)

Yes we do!! At Men's Warehouse now getting Hunter's suits. 1 of the 2 isn't cooperating though...

19

(10 replies, posted in Members' Cafe)

Well, 2 year CT tomorrow... 9/14 is 2 year resection anniversary. really looking forward to drinking 2 bottles of that crap tomorrow morning too. finally got my renovation permit, block is run, need to form and pour the beam and then install a door and two windows to proceed with the demo. hope all is well with everyone and so sorry for the lack of posting on my part...

20

(170 replies, posted in General Discussion)

Fantastic news for sure!

Haven't been on in a while, and what a great way to touch base seeing this post!! Way to go Tiffany! All of our prayers are headed your way for a fast recovery!

22

(167 replies, posted in General Discussion)

I was shocked to read on FB what transpired. My most sincere condolences and prayers at this most unfortunate time. God bless you and your family Pam...

23

(10 replies, posted in Members' Cafe)

Well, let's see, what's happened over the past couple of months...

Started remodeling one of the houses we own. Well, remodel is a bit of a deceptive term. If you consider all cabinets are completely out, all flooring (carpet, wood, tile) is gone to bare concrete, no plumbing fixtures are present, walls around laundry and kitchen are demolished, walls above doors in living room are demolished, and I'm about 25% of the way through modifying trusses to carry the vaulted ceiling into the kitchen and allow me to demolish the load bearing walls, then yes, it's a remodel. Really a renovation though...

Went fishing on Mother's day at the inlaws, had a rod laying on the dock and a fish decided to take it for a swim. I jump in, get the rod, fish still on, climb out of the water and break the brittle plastic ladder. As I get on the dock, (pole was resting on the dock again as I climbed out) the fish takes off again. In I jump, find the rod, still have the fish, put the rod on the dock after loosening the drag, try to climb out putting my foot on the piling, oops, foot slides and barnacles do a number on me. Yell for my son, they ALL decide to come out as he says to them "Dad 'fell' in the water!". I didn't realize 'fell' is the new definition of 'jumped in of my own volition to get my $120 fishing rod". I hand the rod to my daughter, she brings in the 20" redfish, they lower the boat and I climb out on the boat ladder. We had that sucker for dinner that week... didn't lose the fish or the rod, but took a week and a half for my cuts to heal up...

Anyway, that's all with me so far. Weight went up to 217lbs, I've been working on my diet and have gotten down to 206, I figure about 10 more pounds and I'll be in fighting shape again!!!
Derin

24

(18 replies, posted in Good News / What's Working)

Fantastic news!! Here's to the next 6 months and more!

25

(20 replies, posted in General Discussion)

Age: 41
Gender: Male
Age when diagnosed:40
Diagnosis and Stage: Intrahepatic IIA
Jaundice: yes
Initial CA19.9: never tested until after resection
Lymph nodes involved? no
History of cancer? no
Resectable? yes
Had surgery (with details if applicable)? 9/14/11
Liver transplant? no
Hospital: Memorial Sloan Kettering
Oncologist: Dr. Richard Buck (Sarasota, FL)
Second opinion:  No
In remission (currently or was)? currently, 'cured' CA19-9 is 23.9
Survived since diagnosis (years/months/weeks): 1 year, 6 months, 1 week
Chemo 1: Gemzar/Cisplatin
Length (and/or number of treatments) of chemo 1: 3 months, 5 cycles adjuvant
CA19.9 trend during Chemo 1: stable whole time below 30
Side effects Chemo 1: none
Chemo 2: none
Length (and/or number of treatments) of chemo 2: n/a
CA19.9 trend during Chemo 2: n/a
Side effects Chemo 2: n/a
Chemo 3: n/a
Length (and/or number of treatments) of chemo 3:n/a
CA19.9 trend during Chemo 3:n/a
Side effects Chemo 3:n/a
Advice for chemo: IV steroids worked and anti nausea!
Cyber knife? no
Radiation? yes
CA19.9 trend during radiation: stable below 30
Chemoembolization? no
Radioembolization? no
Experimental treatments/Clinical Trials? none
Any other conventional treatments? no
Blood transfusion? no
Alternative treatment? no
Use of supplements? no
Special diet? no
Complications during treatments? leaking bile after resection from reattachment of small intestine to form new bile duct took 3 months to stop leaking
What worked for nausea (best)? Zofran (during radiation only)
Biggest regret:none really
Best advice given to me:from the surgeons: don't look up anything on the internet before surgery, and I didn't. Not even after for several months. Then I found this board and it was game on!
Best tip/idea/recommendation:totally depends on your situation. Use the internet if you are being told something you don't think is right and ask a lot of questions. My situation was unique in that we had surgery scheduled right after my first meeting at Sloan Kettering so I didn't have the time to do any research. We didn't even know it was CC until 5 days after the surgery.
What would you have done differently?nothing
Current status: CT every 6 months, that's it!
Comments:lucky to be here, lucky to have had symptoms because of location of tumor causing bile to back up into the liver.