(4 replies, posted in Events & Fundraising)

Hi Brian,

I didnt get any info for doing a fundraiser...
Are you in the NY area? If you are we could work together and come up with something...



(7 replies, posted in Members' Cafe)

I wish we were closer to Arizona! In NY, but you never know, post the info when you have it, and maybe we'll be able to make it! Its a great idea.

That is amazing news Suzanne! Congrats!


(7 replies, posted in In Remembrance)

Very sorry to hear about your wife Dave.


Im so sorry for your loss.

Again, thank you everyone for your feedback. I have been forwarding it on to my mother in law, and she really appreciates all the comments.
It's not something most people would want to take pictures of but it can definately help raise awareness.

Lisa, I hope you are feeling better smile

Thank you Marion, Lainy and Lisa. i have forwarded your comments onto my mother-in-law (the photographer). Really appreciate the feedback!!!

Hello everyone.

My mother in law (Charlotte Ottilo) is a photographer, and while her sister was battling this cancer she asked to be photographed to help raise awareness. Below you will find a link to her photographs which will be entered into a international photography competition.

Any feedback is greatly appreciated.

http://www.facebook.com/album.php?aid=1 … 4cb4935fb8


(11 replies, posted in Introductions!)

My Aunt was diagnosed in Nov 08 and passed away this month. She was never in any pain, even at the very end. She also said she was just uncomfortable. Her feeling of being uncomfortable were just the organs swelling and pressing on each other and also the fluid build up in her stomach. The only pain medication my aunt was on was the patch. She did not take morphine. My aunt also ate very little, really just egg whites in the morning and a chocolate ice cream/ensure shake in the afternoon.
This cancer is different for every person. By reading through the discussion board you will see that every persons cases are different.

Hope this helped. If you have anymore questions feel free to ask... everyone is so great on this site!!
If you don't want to post on the board, feel free to email me alempka@hotmail.com


(7 replies, posted in Chemotherapy)


Are you taking Genox for Cholangiocarcinoma? I have just done a quick search in google... and it seems like it is mostly used for breast cancer.

In any event, many websites I looked at says that it will decrease your appetite.


That is an amazing thing that you did going to the conference. And very brave!! Hopefully if we all just keep mentioning whatever we can to whomever we can, someone will want to try to do something about this terrible disease...


(18 replies, posted in General Discussion)

Hi Rosy,
My Aunt had CC and she never had a cough while she had it.
Maybe he is sick with a virus or could be allergies...



(4 replies, posted in Events & Fundraising)

Hi All,

I want to do a fundraiser but honestly have no idea where to even start. Anyone have any suggestions? Also anyone else in NY that would want to help with the fundraiser??



(6 replies, posted in Events & Fundraising)

I wish I had known about this tournament sooner. I live only an hour from wilkes-barre, pa. Hopefully next year.


(25 replies, posted in Events & Fundraising)

Maybe if we can get everyone on this site to go to Oprah's website and all submit a show idea for the topic of Cholangiocarcinoma, they will get the point. I just submitted one. It;s really easy and only takes a couple minutes.


This Thorium dioxide (Thorotrast), is this something new that has just come out as a possible cause for CC? I ask this because when I first started doing some research in November I never saw anything even mentioning this. Although my Aunt has passed, I am still very curious about this and will look into more. Thank you for the information.



(13 replies, posted in Announcements)

I'm also waiting for the new bracelets. Marion, I know you sent me a fair amount of the old bracelets when you still had them and I distributed them to my family, but all of our words wore off, now they are just plain white bracelets. I hope the new ones come fairly quickly....

I'll keep an eye out for your post....


(8 replies, posted in Introductions!)

Hi Patti.

I am just learning about CC myself. This website has an area for Newly Diagnosed and there is a list of the top Cancer centers in the Country. I would say that would be good to start there. As for my family member she started at Cancer Treatment Center of America in Philadelphia but may be transferring to Sloan Kettering in New York City.

Sorry I wasnt much help.



(29 replies, posted in Introductions!)


I received the bracelets today. They are absolutly amazing!! Thank you so much. I believe my Aunt and family truly appreciates them. So thank you again!!

Also, I emailed a few people maybe a month ago to see if there is anyway that I could help out the foundation.... as you know I live in New York, so fundraisers, writing for newsletters, whatever you or the foundation needs, I am here.

Thank You again!!



(29 replies, posted in Introductions!)

Yes.. Thanks so much.



(29 replies, posted in Introductions!)

I was hoping to get like 30 oor 40 of them do you have that many? I am willing to pay for them or make a donation.


(29 replies, posted in Introductions!)

So where do you think we can buy the wristbands or ribbons for it?


(29 replies, posted in Introductions!)

My name is Angela. My Aunt was diagnosed this week with Cholangiocarcinoma, it is unoperable becuase it has already spread to teo lobes of her liver. and its very extensive. Any information would help. I have been reading alot online. One thing I have been trying to come accross with no luck is what color ribbon for Cholangiocarcinoma. I want to buy bracelets for the while family, but dont know what color to get.
Angela Lempka