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Marion,
My surgery was at IU Medical Center in Indianapolis Indiana (same as Amylea’s mom). I am 2 years 7 months out of surgery and doing well. Next CT scan is 09/18/09.
My wonderful surgeon was:
Dr. Mary Maluccio
1001 West 10th St.
WD OPW 425
Indianapolis IN 46202
317-278-1531 (office)
317-274-7334 (fax)I would definitely suggest she be on your list. Compassionate, caring and wonderful surgeon.
Thanks,
SueHi Amy,
I had never really had any health problems. I have had high blood pressure for years, but never had any gallbladder problems. When I fell sick, I think it was actually my gallbladder acting up as they found a big stone in it at the same time they found the tumor.
However, my father was in the Army and I did spend a year on Okinawa (1972) while he was stationed there. I have often wondered if that had anything to do with this disease. Unfortunately, I would not be qualified for the same benefits as the veterans are, even tho I was there because of my father.
I did take NSAIDs for years for arthritis pain…Vioxx and Celebrex, which really screwed with my kidneys so I have been diagnosed with chronic kidney failure, but it could be much worse than it is.
I guess I have had IBS type problems for about 5-6 years, but have no idea if that would have any bearing on the disease or not.
Did I say I didn’t have any health problems????
Sue
Hi Suzanne (and Kris!),
I have never been officially diagnosed with a hernia, but I am so sure that I have one. However, it seems to be small and no one is interested in doing anything about it. It’s at the top of my HUGE L-shaped scar, right under my breasts. You know, right where my bra sits. I still have a lot of abdomen pain, and I wonder how much of it has to do with that.
Sooooo, unfortunately, I can’t answer your questions other than so say that you are not alone. If it DOES bother you, I would certainly make sure and speak to the doc about it.
Good luck!
SueHeather,
I was diagnosed with cholangiocarcinoma 12/06. I had a successful resection in 01/07. I had clear margins and never had any chemo. My docs reasoning was that there was no longer anything for the chemo to kill. Let’s hope so.
Here I am, 2 years and 7 months later. I am doing well, and so far have no recurrence. I have been getting CT scans with contrast every 6 months, and am due for another in September. So keep those fingers crossed.
I asked my doctor straight out what her “statistics” have been. She is a specialist in the liver and has seen cases of this before. She told me that after a successful resection, she has had a 50% cure rate at 5 years. Take that for whatever you want. I really needed to know my “real” odds for living, and that was the best she could give me.
But, I am halfway there. I know I am lucky and I try to live each day to the fullest. I still have bad emotional days, days when I can cry at the drop of a hat, but I think I actually have days when I don’t even think about the cancer.
All you and your sister can do is keep going. Don’t dwell on the “what ifs” and make some plans for the future when she feels better. That’s all you can do.
Lots of prayers and hugs,
SueAmy,
When I started this whole adventure, and my blood levels were so out of whack, the doc’s asked about cholesterol meds. They say they can screw with your levels too. I would not panic. I bet that’s what it is. Just give his doc a call and I am sure they will discuss it with you. (Well, he may have to call since they are his blood results).
Take care,
SueI am sitting here, my eyes brimming with tears. I didn’t even know Jeff, yet he knew all of us. He knew what to say and when to say it. when to be sympathetic or when you needed a little kick in the rear. He will be very, very missed.
To his family, I am so sorry.
I am sad.
Sue
Hi Rose May,
I had a resection in January of 2007 (80% of my liver was removed). My doc told me that the liver can regenerate in as little as 4-6 weeks! Yes, they are very able to see it in the scans.
I have to tell you something funny…I came to visit my friends at work about 4 weeks after surgery. I was still weak, but had to get out of the house before I went crazy. I was sitting in the break room with everyone, and my friend asked me how I was doing, that I looked good, but a little pale. I was sitting at the table, sweating, weak and wishing I was home so I could lay down. I told him “I’m tired! After all, I’m growing a liver here, you know!” He was on the floor laughing. And still mentions it to this day.
The only problem I have had is some ongoing pain in my upper abdomen. Part is probably from the nerves that were cut, some is probably from scar tissue, but doc also mentioned that it’s possible that my liver has grown to fill the space that was available, so it may be pressing on some of my organs in a funny way.
But, my lab tests all look good so far, so I try to work with the pain and I don’t worry about it too much.
Good luck to you. I am so glad you found us!
Sue
I
Judy,
I also meant to add…I really questioned her “no chemo” stance after surgery, but she said that there was simply nothing for it to kill. Well, I know there may have been SOMETHING, but I didn’t push that decision. I figured she was the one with all the knowledge. I will let you know how I feel about that decision at the end of 3 more years (if not before).
Good luck with your test! I know how bad that anxiety can get, but it sounds like you are doing very well!!! Keep up the good work!!!
Sue
Hi Judy,
Welcome and congrats! Not many people are able to traverse the path you have… I, too, have been one of the lucky ones. My tumor (5cmX5cm) was also found incidentally during a gallbladder ultrasound. I had surgery in January of 2007 with clear margins. So far, so good! I am now at CT scans every 6 months with my next one on March 18. As always, the nerves will ramp up here very soon, but I just keep telling myself that all will be well.
My doctor gave me a 50/50 chance to live 5 years. That has been her experience with patients that are able to have resection and have clear margins. Well, I am at two years, so I am getting there!!!
I also have IBS issues and reflux. I STILL have abdominal pain, not sure if it’s from the nerves that were cut during surgery, or the scar tissue. No one can find a real reason for it. I only know that it’s real and I wish someone would make it go away.
But, overall, I feel better than I did prior to finding the tumor (something was obviously wrong, but I had no idea…) and go about my life in a fairly ordinary way.
You will find a lot of help on this site. The people here are fantastic and there is always good advice if you have any questions.
Welcome!
SueThis news is even more wonderful than mine! After all you and Tom have gone thru, to be having such success…that’s fantastic! Congrats to both of you!
Thank you all for your great words. I am always hesitant to post on here, but you guys ALWAYS make me feel better. If i can bring hope to just one person, then my day is complete! I didn’t do much to celebrate, but my husband came home and gave me a big hug and told me “Happy Anniversary to US!” He said he didn’t know what he would have done without me for the last two years. That was as good as cake and ice cream!
Suzanne-I still get my scans every 6 months, and hopefully that will last another year. I am still not completely sure I am ready to go to once a year. They always do an abdominal/pelvic CT with contrast, sometimes a dual or triple phase, if that makes sense. On the bloodwork, they always test all my liver functions, do a complete CBC and a CA19-9.
I also have chronic kidney failure (stage 3) and my nephrologist does bloodwork every three months to test my renal levels. The surgery dropped me from 51% function to 40%, but I am maintaining that. Because of the results of my last renal panel, I am now on iron, potassium, vitamin D and something called Zemplar for raised parathyroid levels. All this has to do with my kidneys primarily, not my liver, but I am starting to feel like I’m 100 years old! I already take meds for high blood pressure and reflux…I feel like a walking medicine cabinet!!!
Thanks for all your good words. Sorry for such a long post. You guys really brighten up my life!
Take care,
SueRobyn,
You and your mom are in my prayers also. Please let us know how you are both doing as soon as you can.
Take care,
Sue
