Topic: I'd Never Heard of CC.....

Hello to everyone here,
I was a volunteer with Hospice of Central Florida for a number of years and worked at a nursing home for 10 years. I've never heard this diagnosis until a couple of months ago when a family member in Kentucky told me that her sister in California had been diagnosed with this disease. Gail had been a flight attendant retiring after a long career of flight and travel. She was only found to have CC for about 3 1/2 months before her death last week. Gail was very health and appearance conscious, living into her 70's one would have thought she would have lived to be 100. Not ever having heard of this illness I sought out information and am glad to have found this wonderful, informative website. I will appreciate reading and learning all I can to better understand answers to the many questions that I have. Thank you all for having me share the wealth of information here.

Re: I'd Never Heard of CC.....

DKing....I am glad that you have found us; we are here to help you understand.  Cholangiocarcinoma or "bile duct cancer" is an orphan disease (less than 200 thousand people per year.)  Symptoms of this disease generally don't occur until late stage (IV) and treatment options are limited.  It is unlikely for the general public including GP's and some GI doc's to encounter a Cholangiocarcinoma patient in their practice.  That is what happened to dear Gail. 
Please don't hesitate from asking questions.  Our members are incredibly supportive and caring. 
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: I'd Never Heard of CC.....

Dear DKING welcome to our elite club/family and I am sorry to hear about your family member's Sister. What we know is that we know not much but are moving along in an upward motion, slow but sure. When this Board was started in January of 2006 there was just a handful of us and now we have 8 Moderators and sadly we are growing by leaps and bounds. The good part is we have been making CC more known and new treatments are popping up. This is a place for asking, advising, venting and especially for some hope and miracles. Most of all it is people from all over the world sharing their love and caring with each other. BTW thank you for your Hospice work!

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: I'd Never Heard of CC.....

I just wanted to add "God bless you for being a hospice volunteer". My husband is in hospice and we are ever so thankful and grateful  for all you do. I am very sorry to hear about Gail.

Re: I'd Never Heard of CC.....

Debra,

I too want to thank you for being a hospice and also nursing home care provider.  Also appreciate your taking the time to find this site and educate yourself about this relatively unknown cancer.   We appreciate your interest and hope you will continue to join us in our discussions.   Knowledge is everything and we will continue to share what we can with you. 

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: I'd Never Heard of CC.....

Hi Debra,

Welcome to the site, although I am sorry that you had to find us all here and I am sorry to hear about Gail as well. We'll do all we can to help you understand as much as you can about CC and if you have any question then please ask and we'll do our best to help answer them. The search forum function will also help you seek information that will have been posted here on the site by others.

Post away as much as you want to and I look forward to hearing from you more.

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.