My Introduction

Dear Matt,

I recall being in a fog, sometimes I still am, for about the first couple days after chemo. I continued with the antiemetic meds for about the same couple of days, which they always make me groggy. Then I was okay until the next chemo. Hang in there and keep up the positive attitude! Sending thoughts and prayers your way!
Melinda

Hey Matt my port was definitly still tender after about a week. I also decided to take a wave runner for a spin a few days after my port was installed and as I was on the water making a turn the end of the handle bar kinda hit my port which also probably caused some of the tenderness but I recall it being fairly tender a lot longer than I thought or had expected. Ice packs were my friend.

Hey, Matt…….LOVE that Propofol!!! Poor Michael Jackson he loved it too much. I can’t take Fentanyl, does nothing for me nor did it help Teddy but I do always ask for an Epidermal and that helps for the first 2 days after surgery. I have made a decision about the Colitis and am probably going to do a Colostomy…will post more when I know more. I always like to read your posts as you are always full of positivity! Stay good!

Matt,

1. I was also foggy and sleepy for almost every infusion of Gem/Cis….sometimes more than others….but always on day one, when I received both Gem and Cis. That wasn’t the case so much for day 8 of just the Gem. The foggy /sleepiness would start within hours of getting home…and go on for a day and a half to two+ days and then it was back to normal again.

2. I was given the antiemetics via IV before being given the chemo. (They do it in separate bags…not at the same time). I sometimes used Atavan to relieve queasiness, if it occurred in the daytime. When it did occur in the daytime, it was generally about 3-4 days after I got the chemo infusion. I didn’t dry heave daily until after about round 4 or 5. Before that…..I didn’t have even queasiness even the several days after chemo ….until as I said…about 4 days later. Then, the first round, I was queasy for a couple days. Everybody is going to react differently to the chemo agents though.

3. Glad to hear that your first infusion was uneventful. I think you’ll find that the Gem alone infusion is easier on you.

4. I’m so sorry to hear that you had such an ordeal getting the port implanted. It sounds somewhat similar to mine, though even much worse when it was put in. I was awake during it all (were you?) so I was totally aware that the surgeon was having trouble getting the port to lay right in my chest.

5. I didn’t hear any complaining in what you wrote. Your remarks and questions are valid and reasonable.

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!!