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Here I sit Saturday morning at 3am, can’t sleep. Time to go upstairs to try to anyway. So far so good, no nausea so far, Emend seems to be working! Relaxing weekend planned, maybe fishing a bit if weather is nice and I’m up to it…
I’m gonna throw a Mazel Tov in there, you can’t have too many religions praying for you with CC involved! I had plenty of different ones during my current journey. Fantastic news. Mention to the doc if they have a cancellation that you are willing to move up in line, I did, and my original 9/21/11 date was bumped up a week to 9/14, can’t hurt to ask, can it??
I just returned from Houston Thursday. I go back (if all goes well next Friday and my bloodwork the following Friday is OK) the 20th of Feb so I’ll miss you by a week…February 4, 2012 at 3:48 am in reply to: In Hospital pain in Solar Plexus – Action Plan required #57321
One symptom you mentioned was nausea after he ate. That was definitely one of my symptoms, every time I ate anything whether it was a large or small meal I would have nausea. I had the right branch of my bile duct blocked right where it splits just inside the liver. Immediately after installation of the stent (via the ERCP procedure) my symptoms started to recede and the nausea stopped almost right away, literally the next meal I ate had no nausea. My other main symptom was very dark urine (almost orange and chalky it seemed) and occasional (not the greatest subject matter here…) very light or clay colored floating stools. My billiruben didn’t get above 3.0, maybe even less than that from what I recall, so I did itch but not insanely all the time. Itching was present mostly shoulders/back and legs a bit too. My blockage was so small that it was virtually undetectable with an MRI and the ultrasound so the ERCP was the only way to know for sure. Of course, mine was done pre-surgery prior to my ‘modified anatomy’ also…
Don’t know if this will help you or not, but that’s what I had for symptoms and a blockage was definitely (Klatskin’s tumor) there in the wall of the bile duct.
Made it home, no accidents along the way!! Just think, I get to do this every Friday for the next 3 months except for off weeks!!! Took about 5 hours with the doctor visit included. 4.5 without a visit to the doctor. My bloodwork looked pretty good today also after the off week:
We will see how next weeks levels read!! Have a great weekend everyone!
I’ve got one of the better seats, closest to the bathroom and the massage/heat feature works too! Cisplatin done, not feeling any bad effects so far, and about 45 minutes to go with the 2nd dose of fluids and I’ll be done for the day…
I have literally gone to the bathroom 5 times in the past hour. Couldn’t wait more than 6-7 minutes between the first 2 times, then 15 minutes, then 20 and 20. Better make sure I go right before I get in the car or I will be stopping on the way home!!!!
OK, this is ridiculous… I can’t stop going to the bathroom!!! I just got the anti-nausea shot with the steriods and Gemzar is in, now I’m about done with the magnesium/potassium fluids and Cisplatin is about to start. Man, I literally went to the bathroom 6 minutes ago and it feels like I didn’t even go…. At least I picked a seat near the bathroom. And I think that shot of Lasix isn’t helping things either…….
Well, I’m back in Sarasota. My cuts/scrapes are healing well, and the blisters are too. Not sure what the doctors will say tomorrow, hoping I can get on with it and start the Gem/Cis as planned. As I said in a post earlier, I didn’t even think about my blood count levels, just did what I would normally do… I guess I have to start taking that into account from here on in while going through the chemo. Either that or be more careful and not touch hot things, one or the other, huh? Wish me luck for tomorrow!
I didn’t start chemo until 1/13/11, 4 months after the surgery. I’ve had multiple CT’s since then (bile leakage with drains were in and I was on antibiotics until the end of December so chemo couldn’t start until I was done) with nothing to show on the CT’s so far. 8 weeks, 16 weeks, I don’t know if it makes a difference or not. I’m proceeding at this point, Gem/Cis starts tomorrow at 9!!
I’m 40, and technically wasn’t diagnosed until after my resection surgery but symptoms started late August and 9/14/11 I had my surgery. I’ve got an 11 year old daughter and 13 year old son as well (very close in age to yours too!) I’m similar to you in that I had no lymph node involvement and clean margins. I had the same question that you have, chemo or not? At Sloan Kettering in NY, it was standard protocol with CC to have adjuvant chemo and subsequently radiation with chemo after that. Sooooooo, I’m doing the chemo. Was your cancer present in the liver or just bile ducts? Mine was bile duct only and that was the only location, nothing had spread anywhere else.
My wife and I weighed the options and I would rather do the chemo as a preventative measure versus having a recurrence 5 years from now and wonder if I had done the chemo right up front would it have made a difference. I have had 2 treatments of Gemzar and this Friday after I get home from Houston I’ll have my first Gemzar/Cisplatin treatment (if they give it to me, got 2 nice blisters on my left hand, darn chain saw muffler is hot…). I haven’t discussed with my local oncologist in Sarasota how long we would go for, and Dr. Javle at MD Anderson made the same recommendation regarding treatment even though I had clean margins.
If you read Lainy’s posts, her Teddy was similar in that he had clean margins yet I don’t believe he did any adjuvant chemo and had a recurrence several years later. It’s a very tough decision. Mine was easy in that I’m still young, healthy, and should be able to tolerate it well. We shall see on Friday! In any event, I wish you luck in your decision process. Know that all here offer all the support in the world!!
Yes, my wife was recently speaking with a fellow mom at the bus stop waiting to pick up our son. She had breast cancer and went thru the chemo routine and said that they really don’t like it if you get cuts, sores, etc. I guess I’m going to have to stop climbing on the roof to cut down 12″ sections of 14″ diameter tree trunks that hang over the roof and catch them with my right hand as they fall to avoid damaging the roof while going through chemo… I’m using mupirocin and bandaids to hopefully heal them up. Got a bunch of little scrapes and cuts that I wouldn’t normally think twice about but honestly never even considered the ramifications of being on chemo and the low white/platelet levels. Only bled from one or two of the scrapes, and it did stop bleeding so it can’t be that bad, right?
I like being a part of an elite club!! I’m crossing my fingers for this Friday and hope that I can at least make it to services Friday night and see what happens from there. I’ve read other stories of Gem/Cis and some tolerate it well, hoping I’m one of those. If I lose the hair, life goes on, I’m in no way vain and it will grow back. Besides, there’s a crap load more grey in there right now compared to a few months ago too!!
I decided to try to keep the same ‘schedule’ after chemo so I fished again on Sunday and only washed one car the weekend before last… This past weekend, we took it up a notch and had fun with a chain saw trimming trees for 4 hours. Huge pile of debris when we were done too. And we cleaned out the gutters. My wife seems to think that I’ll be a bucket of mush after the Gem/Cis this week, so we’ve had the honey do list generated and I’ve been picking off things as best I can!
Make a note to yourselves, if you ever operate a chain saw, don’t let any part of your body touch the exhaust portion of it… Freakin’ hot… I have 3 blisters on my pinkey, ring, and middle finger of the left hand to show for it!
Anyway, I’m still hitting the gym, doing light cardio, actually tried a few ab exercises for the first time last night since the surgery. Still sore a bit, but I’m repeatedly told that it will take time for that to heal so I can deal with it!
We have no plans for this weekend, only Synagogue if I’m up to it Friday night after the Gem/Cis. We shall see…. wish me luck, and thanks to everyone for the comments!!
Just read through this thread and there were a couple of mentions about alcohol and its relation to CC. I too have the same question as no one could tell me why I came down with CC to begin with.
I was not a heavy drinker at all, 1x maybe 2x a week, 2-3 drinks at most each time. Yes, college was different, but I was never a binger every day or every weekend. Has anyone ever heard about alcohol and a correlation? I’m curious to hear.
Hi, I’m Derin Hampton, born in Ft. Lauderdale, school at USF in Tampa for Mechanical Engineering, lived in Jacksonville, FL for 10 years where our two kids Hunter, 13 and Sydney 11 were born and my wife got her masters degree at UNF, and moved to Sarasota, FL in 2005. My wife of 16.5 years is Eileen. She’s mom to our kids and substitute teaches here and there. I’m a project manager for the mechanical division of a construction company that does government contracts for the most part.
I was getting nauseous after I ate anything, had really dark urine, and itched like crazy. Checked into Sarasota Memorial Hospital, CT and ultrasound didn’t show anything. ERCP and installation of a stent to relieve the symptoms showed a very small 1cmx0.5cmx0.7cm mass on the right bile duct right above the Y just inside the liver. We called and called and got an appointment at Sloan Kettering, flew up and had surgery scheduled for the 21st of Sept. Someone cancelled, I was bumped up to the 14th, and here I am doing adjuvant chemo as a preventative measure. Took out the gall bladder, all of the bile duct, 3/4 of the liver and used my small intestines to make a new bile duct. All margins were clear by at least 0.7cm too. I’m still working out, exercising, working, and carrying on like there isn’t any caustic chemical being injected in me on a weekly basis. So far, so good!
I concur with everyone above to get the second opinion. That’s your best bet. I kind of feel old after all of these younger people posting, but heck, I’m only 40, well, 41 in April, but still only 40 for another couple of months!
I did not have the official CC diagnosis until after my surgery and the pathology came back from the bile duct that they removed. I just knew that I had to have surgery of some sort or the other to get rid of the blockage that was causing my elevated liver enzymes and high billiruben. I am lucky in that everything was removed and nothing metastasized to any other organs or lymph nodes either.
I’m still doing the chemo, 3rd dose this Friday. I wish you the best of luck from here on out, and try to think positively! I know it may be hard, but I’ve always been an optimist and try to look on the positive side.