Topic: CC patient just found this site

Hi,
I am glad to have found you all. I am a 49 yr old wife and mom to a 24 yr old and an 18 yr old. I was diagnosed in May of this year. I am very blessed to live 3 1/2 hours away from UAB, which a great hospital. I had a resection in June, in which they removed the bile duct areas, my gall bladder, and 60% of my liver. I got an infection the first week out and spent 35 more days back in the hospital. I've had three external drains, two at one time, and now have one at home. My leak refuses to heal so far, which is annoying. I am going for a second opinion with the oncologist at UAB. My local one felt I should because he wasn't sure of the best course for me. I can't have radiation because of my unstable surgical areas I guess.
I am completely at peace with my situation, which I imagine because I am a Christian and know I will see my family and close friends again. I do hope I can live for many more years so I can see my kids married and have grandchildren. I will ask questions I have about other topics on the other discussion boards. To all other new people, I say, never give up hope!!!

Re: CC patient just found this site

Hi Laura and welcome to our extraordinary family but sorry you had to find us. You are some kind of warrior and we are proud to have you here. My husband had a Whipple Surgery and he also had 2 external drains. They were taking forever to heal. Everything came about when we were visiting our kids in Milwaukee and our 2 week vacation turned into 2 1/2 months! On our flight home both tubes blew out! I think you can appreciate that one. Long story short, Teddy's tube site just wouldn't heal and the leakage would not stop. The new ONC where we live did a CT Scan and discovered there was a small hole at the incession site, inside. Since he had already had an aborted Whipple then the real deal 3 week later, she just didn't want to put him through the same type of surgery again to repair the hole. She asked him if he would be game to go into rehab for 3 weeks on NOTHING but an IV, not even ice chips, to heal and it did! Just a thought that maybe something is going on inside not outside that is causing the leakage yet. Wishing you the best of luck and you have come to the best place to be. Please keep us updated as we truly care!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC patient just found this site

Laura...welcome to our site.  Congratulations on your surgery and for hanging tough through 34 days of hospitalization due to the infection.  Not a small task yet you came through and are here to tell us about.   
Laura...we have numerous postings re: leaking drains and until others come around I thought to enclose a few links for your perusal. 

http://www.cholangiocarcinoma.org/punbb … hp?id=1290
http://www.cholangiocarcinoma.org/punbb … hp?id=4416
http://www.cholangiocarcinoma.org/punbb … hp?id=4760

Again, I am glad that you have found the club no one wants to belong to, but is happy to have found. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

4 (edited by Pamela Sat, 10 Nov 2012 10:31:53)

Re: CC patient just found this site

Hi Laura,

I am sorry you had to find this site, but also happy you did find us! I have no experience with drains. Sorry. I just wanted to let you know that there are many people here that are eager to help in any way they can. My daughter has CC and is not able to have surgery yet. She does have a liver surgeon that is a member of this site. I can give you his e-mail if you would like to contact him. He may be able to help you or point you in the direction of someone close to you. Wishing you all the best. Please come back and visit often.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: CC patient just found this site

Hi Laura,

Welcome to the site. So sorry that you had to find us all here and I am sorry also to hear what you are going through right now. But, I am glad that you have joined us all as you have come to the best place for support and help, and you will get so much of each from everyone here.

Not really much that I can add to what the others have said to you, but I just wanted to stop by and welcome you here. Thanks so much for sharing your story with us all and I am glad to hear that you are seeking a further opinion from the Onc at UAB. A second or even a third opinion or more is a good thing and one that we welcome here! I hope that you will get some good news from UAB and please let us know what they say/recommend.

Yes never give up hope, so very true indeed! And when you do have your questions to ask come back here and ask away and we'll do what we can to help in answering them. We are all here for you and we care.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: CC patient just found this site

Hi Laura,
Welcome to this wonderful family. I'm sorry to hear you are still dealing with drains. I became septic after my second resection and had to have drains put back in, they are no fun ! Your attitude and faith are wonderful. If you ever want to talk please feel free to call me, 330-903-6868.
I will be praying for you.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: CC patient just found this site

Hi everybody, and thanks for your responses. I don't see a way to reply individually so I will just reply to all here.
Lainy: My leak IS internal, but I don't know if I could go with no food to heal. I am at 99lbs, up from 95. I have had a hard time getting my weight back up.
Marions: thanks for the links.
Pamela: I'm so sorry that your daughter is going through this. As a mom, I would much rather be the one who is sick. I pray that she gets her surgery or that she is healed some other way.
Gavin: thanks for the welcome!
Lisa: I am originally from Canton Ohio and graduated from Massillon! And yes, drains are a pain!!!

Re: CC patient just found this site

Laura, Just wanted to mention that the IV my husband was on for 3 weeks was a "feeding" IV. The "ingredients" consisted of all the nutrients one would need and he lost NO weight. It was pink and he called it his candy bag. The concept was that by 'starving' the hole it would heal and it did. The Doctor didn't even want us to bring food in and eat there as she didn't want him smelling the food. I know it all seems strange, but it worked with no surgery.  Good luck om ,eeting with the new ONC.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC patient just found this site

Welcome, Laura. I too am a Mom to 23, 19, and 14 year olds and have been recently diagnosed with unresectable intrahepatic CC. I know well the feelings you have that you would do anything to spare your children the loss of their mother! I am much more worried about my children than I am about me. I try to get up everyday and thank God for another transit around the sun to be alive, here, and another night with my husband. Good luck with your weight, that is important so you can fight this disease. Ind definitely get those 2nd opinions. It's a small club, this website -- lots of love here, tons of good information and advice from others who share your specific concerns. It's been a lifesaver for sanity!