Topic: Initial post

Hi. I came across your foundation website when I began my research into intrahepatic cholangiocarcenoma. My wife was just diagnosed with ICC. We have not started treatment yet but the course laid out for us is chemo (gemcitabine/cisplatin) and then radio-embolization.

As with many others posting, this was an absolute shock as she is very healthy, active and very health conscious. She always goes to doctors for care and for maintenance procedures.

We live in Eastern US and are planning to get consult visits at a few cancer centers, including Sloan and U. of Penn. Trying to set those up now.

We are also going to pursue clinical trials if she is a candidate.

Right now our heads are spinning. But we are preparing for battle and have a great support group of friends and family.

Re: Initial post

Dear Scheitrumc, welcome to our remarkable family, sorry you had to find us. Sure sounds like you are already doing everything so right. Not only is your head spinning you feel like you were hit by a baseball bat. But I promise you once treatment begins the fright turns to fight. BTW  GEM/CIS seems to be the cocktail of choice. It's important to have your team around you, Medical, family and friends. When does your wife start Chemo? Try to read up on here when you can as knowledge is the best tool for fighting CC. You have come to the right place for advice or to just vent, we all have big ears! Wishing you the best and please keep us posted on your wife's progress!

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: Initial post

SCheitrum...I would like to follow Laine and welcome you to our site.  Please add our members to your support system; we are here to help, to share thoughts and information with anyone touched by this disease. 
Others will chime in real soon. Please don't hesitate from asking questions or offering your advice to us.  We are in this together.
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

Re: Initial post

Hi Scheitrumc,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your wife. But I am glad that you have joined us here as you are in the best place for support and help, and you will get a load of both from all of us here. I know what you mean about your head spinning right now, mine was too after my dad diagnosis. I'd never even heard of CC before that and trying to take everything in, no wonder our heads were spinning.

From what you say, it sounds like you and your wife are doing the right thing in seeking further opinions and make sure that you get them from doctors, onc etc that are very experienced in dealing with patients with CC. Find out as much info as you can, learn as much as you can as the better informed you are the better you will be in making decisions.

Keep coming back here, ask questions and we'll do what we can to help. The great support that you have from friends and family will be invaluable during this fight and now you have all of us as well! We know what you are going through and we are here for you. Please keep us updated and let us know how things go.

My best wishes to you and your wife,

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: Initial post

I'll chime in and say welcome to the CC club nobody wants to join - - but when you join this supportive site with all these discussion boards, you are among friends and those who really do care and offer advice, experience, and sometimes just a shoulder to lean on. This has been a godsend to me.

Second and third opinions are the way to go. It is such a rare cancer that you won't find the absolutes for care you find with other cancers. Everybody becomes a little bit of an expert in their cancer and we all share notes here. Keep us posted on your journey!!

Re: Initial post

Hi Scheitrumc,

I just wanted to welcome you to this site and tell you that I am sorry to hear about your wife. It is such a terrible shock to find out you have cancer. My daughter, Lauren is the one with cc. Like others have said, once a plan of attack is in place, you will feel so much better about things and really begin to fight. It helps so much to have an oncologist that you really like and trust. I am glad to hear you have a great support system. I wish you and your wife all the best in your journey and hope to hear from you again.

Best wishes,
-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: Initial post

Hello there.

I want to add my welcome to the others and say I am very sorry you had reason to be here.

Sounds like you are doing all the right things and like Lainy, I believe that getting a treatment plan in place replaces the feelings of stunned disbelief with the feelings of a fighter!!

Keep us updated!
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.