hamptonsarasota
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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!
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.
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…
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…
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…
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!!
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……
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…..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? 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…
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!
