Topic: So glad to find this community!

Hello all,

Two weeks ago, my uncle was diagnosed with Intrahepatic Cholangiocarcinoma.
He was feeling ill and had been having symptoms of jaundice. The doctors initially suspected just an infection, but further tests showed a mass.
According to the oncologist, the tumor is still localized, but has formed in all of the branches of the bile duct so his only option is a full liver transplant. He'll start chemo and radiation soon in the mean time. He is currently receiving treatment at UCLA.

This is all extremely new to me. I'd never even heard of bile duct cancer until my uncle's diagnosis. I'm extremely close to him, we are a close family so this is very difficult for all of us. I'm so happy to have found a group of people to connect with who are experiencing this type of cancer (either personally or a loved one). I could use any and all of the support and experiences you may have.

Thanks for reading!

Re: So glad to find this community!

Hello and welcome to our remarkable family but sorry you had to join us. I am very sorry about your Uncle but know that he is at an excellent Hospital for CC treatment. Most people have never heard of CC as it kind of just sneaks up on you and is usually not diagnosed until much later. Knowledge is the best tool we have as Care Takers/Patients to work with so I suggest you start reading and looking up phrases you hear on Google and etc. Many newbies also like to read our posts. If you have a word you don't understand we have a search engine at the top and if you type in a word many posts will come up about that subject. The next best thing the family can do has to do with an upbeat attitude. Attitude is everything. You have come to the right place to ask, vent or even advise.  Please stay in touch with us as to how your Uncle is doing 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: So glad to find this community!

Thank you for your kind words!
Yes, PubMed has become my new best friend. I've been researching absolutely everything I can on my uncle's specific type of CC. There are a lot of recent articles, especially concerning transplantation. This website gave me a really good starting off point.
I feel like if I have as much information as possible, at least I have control over something.

Re: So glad to find this community!

Also, if you feel something isn't right you will know what to have your family ask the ONC. You are now the go to girl!  You would be surprised at how many Medical people still have never heard about CC. My husband started his Journey with itching that was just getting worse and worse. Then the Jaundice. I told him I don't like him in yellow. He had a Whipple Surgery as his CC never got to the liver and the Whipple bought him 5 1/2 years. Any questions, just ask, everyone is here to help.

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: So glad to find this community!

Hi Riddles,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your uncle. But I am glad that you have joined us all here as you sure are in the right place for support and help and I know that you will get a ton of both from everyone here. Yes I know what you mean about everything being extremely new to you and I felt like that as well at first. I'd never heard of cholangiocarcinoma until we got my dads diagnosis of it and his CC was deemed inoperable at diagnosis.

Like mine was then, I know that your head will be spinning right now with everything that is going on. But you have done the right thing in coming here and seeking as much information as you can. Keep doing that as the better informed you are about everything then the better equipped you will be to help your uncle with everything CC related.

There is quite a bit of info here on the site regarding transplants for CC and a few of our members have been or going down that route. I am sure that you will here from them soon, and we do have a transplant and surgery board here as well. I know that you will have questions so please feel free to ask and we'll do our best to help in answering them for you.

And keep coming back here as well and let us know how everything goes. You are not alone in this now, we are here for you. We so know what you are going through right now and we care.

My best wishes to you and your uncle,

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: So glad to find this community!

Hi Riddlesdarkangel15,

Lainy and Gavin have said it all really but I too just want to say hello and welcome you to the site.  I am sorry that you have had to find it but I am in no doubt that you won't regret joining here.

Everyone is incredibly supportive and patient and you will want to support you as much as your Uncle.

Clare

In the stars now . . . .

Re: So glad to find this community!

Welcome Riddles.  Sorry you had a reason to find this site and so sorry to hear about your Uncle.  Sounds like you are a fantastic advocate for your Uncle and he is lucky to have you!

I am a 3 1/2 year survivor of Extraheptatic CC and I had Whipple surgery and adjuvant chemotherapy.   I feel fortunate indeed that I was able to have surgery which is the only cure for this terrible disease.  Your Uncle is also lucky that they feel surgery is an option for him.

I know others on this site have had experience with liver transplantation and I am sure they will come along soon and tell you of their experiences.

Please keep us updated and best wishes to your Uncle.

-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.

Re: So glad to find this community!

Riddles....I would like to follow the other, wonderful people welcoming you to our site.  The absolute good news is that your dear uncle is (possibly) eligible for a liver transplantation and I am wondering whether that is what you mean by his being treated at UCLA? 
Also I appreciate your family closeness because; with a disease such as this, it truly takes a mountain of support for the patient.  You are doing everything right by informing yourself to the utmost, as that in itself is one of the greater gifts we can give to our loved ones. Knowledge is power and it allows us to make educated decisions; you are practicing just that. Kudos to you and your family. 
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: So glad to find this community!

Wow! thank you all for your support. I definitely came to the right place.

Marions - yes, my uncle is being placed on the transplant list and will be getting the surgery at UCLA. He is currently under the care of Dr. Busuttil. We've heard he's a "hotshot" so to speak in the liver transplant world. If anyone has had experiences with him as a patient or caregiver, please share.
My uncle is due to start chemo in a couple of weeks so once that gets underway I will most likely start a thread in general discussion to keep everyone updated. Dr. B said the wait for a liver is usually on average 6-9 months so we're hoping he stays in that time frame.

I so appreciate everyone sharing their experience. It makes me feel much better to know that there are others who are going through this same thing and can still have such an upbeat, supportive attitude.

Re: So glad to find this community!

Just wanted to mention:  by entering Dr. Busuttil's name in the Search function, several postings will appear.  Here are a few:

http://www.cholangiocarcinoma.org/punbb … 408#p71408
http://www.cholangiocarcinoma.org/punbb … 238#p71238

Also, I know of someone (not a member of this board) who had a successful transplant at UCLA.  Hence, the best of luck and tons of good wishes are heading your way.
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: So glad to find this community!

randigb -I'm so glad to hear that your surgery was successful. What is Whipple Surgery? I am familiar now with adjuvant chemotherapy, but have not heard of this surgery.

marions - that's wonderful to hear! It really is fortunate that my uncle can receive treatment at UCLA. Dr. B is very optimistic about his chances with the transplant.

Re: So glad to find this community!

Riddles,

Whipples surgery -

http://www.surgery.usc.edu/divisions/tu … ation.html

http://www.hopkinsmedicine.org/kimmel_c … edure.html

And there are a ton of posts from the members here on the site about the whipples as well should you wish to read more about it.

Best wishes,

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: So glad to find this community!

Riddles,

The links that Gavin posted tell all about the Whipple procedure.  I believe it is used only for Extra-hepatic CC since it does not remove anything from the liver itself.  I had Stage IIb ECC, no lymph node involvement.  Some of the tumor was "poking" into the head of my pancreas which is one of the parts of pancreas removed during a Whipple. 

-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.