mattreidy
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Roux-en-Y (Hepaticojejunostomy) is actually what they do after the resection of the tumor, common bile duct, gall bladder, and part of the liver to “re-plumb” the area so that the bile from the liver continues to flow into the intestine.
dhometexas wrote:And a bit more- I have read that a Roux-en-Y is a surgery that would be used to remove a Klatskin tumor. Is this the case?Welcome to the best little forum out there for information and support.
Take a look at my Introduction thread. I too had perihilar CCA and had it resected in Jan 2014 at age 47. Prior to CCA I was in excellent health. That helps.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
I was in the hospital for 10 days and took another 4 to 6 weeks to recover at home before going back to work. I had some complications, however, and actually had two surgeries in under 24 hours and also had some wound infections to deal with. Within a year I was feeling great. Digestion and BMs have never been the same but that’s manageable considering the extent of the plumbing work that was done.
My FoundationOne genetic test results from the recurrent tumor in my peritoneal cavity are in. It took just over a month to get them the sample and get the results back.
Gene – Alteration
FBXW7 – R278
KRAS – G12D
PIK3CA – N345K
TP53 – R175H
FAM123B – F173fs*36
MAP3K1 – L920fs*10
MLH1 – K678fs*7Now on to searching for trials that target these specific genetic mutations…
Julie – This is fantastic news! Like Porter said, move on and enjoy as much as you possibly can in between future checkups. You got this! We’re continuing to root for you. xoxo
Thanks Marion and Julie. Julie, I was “out” for the port installation. I made a point of being adamant about that. Not out enough to need breathing help, but I remember NOTHING.
After a 6 hour surgery to fix a bile leak 18 hours after my original 8 hour resection surgery I woke up on the table after the took my breathing tube out. That was because they were manipulating me to take xrays trying to find a missing needle (!) and it hurt like heck!
That story scares me and every anesthesiologist I tell it to so I make them hit me hard with fentanyl and propofol when they’re doing these “minor” procedures… ha
Nonetheless, I can see what a difficult time they had with the port and it’s still tender a week later. I just didn’t have to be aware of it at the time and I’m thankful for that.
Hi everyone,
I started my first round of Gem/Cis chemo last week and will have my second infusion tomorrow.
The installation of the port in my chest was apparently more difficult than normal. It took two hours and I’ve got about ten holes in my chest and neck where they attempted to thread the catheter into my vein along with a bunch of bruising to my neck and chest.
As for the chemo itself, it’s been pretty uneventful. My only real complaint is that I’m foggy and sleepy most of the time. I’m not sure if it’s the antiemetics I’m on or just my body’s reaction to the chemo itself at this point.
I did want to ask: Do most people continue to take antiemetics all the time while doing chemo or only for a few days right after an infusion?
I’m sorry for what probably sounds like a bit of complaining… I’m finding myself using this thread as my blog in hope that it helps others in the future.
On another note, I found this interesting: http://7thspace.com/headlines/504446/surgery_for_recurrent_biliary_carcinoma_results_for_27_recurrent_cases.html
Thanks for taking the time to read through my journey and replying Derin. I’m so happy that you’ve kept the beast at bay! I’ll be rooting for that to continue for another 40 years.
I find it interesting that you had radiation in addition to chemo in the adjuvant setting. I’ll have to ask if that’s something to consider at this point in my treatment. Thus far nobody has mentioned radiation.
I’m scheduled to get my port tomorrow morning at 6:30am and then start the chemo the next morning. Hopefully my experience will be as smooth as it sounds like yours was!
First, I want to thank you all for the continued support.
Insurance would not pay for a PET scan. They consider it experiential for CCA. So in place of that I had a chest CT w contrast and it came back clear (yay!). Tomorrow I will have a bone scan and I don’t expect anything to show up there.
Next Wed I’m scheduled to have my port installed and then start Gem/Cis the next day. Two weeks on, one week off per cycle. Standard stuff, I think.
I’m hopeful that I can do 3 rounds and then just have surgery to remove this new tumor.
Time will tell!
-Matt. xo
Hi Kathy,
My understanding is that CA 19-9 is not 100% reliable but anything over 20 could be an indication that something bad is happening and should be followed up on.
My CA 19-9 was over 400 prior to tumor resection and then hovered around 10 for a year but shot back up to 360 and they found a new 1.5cm tumor causing that. I’m about to start chemo for the recurrence .
I’d recommend you get your oncologist to order a scan asap.
-Matt
