(3 replies, posted in Introductions!)

Laura you are on the right track as knowledge is our best too to fight with. We have a Search engine at the top and if you type in any word up will come posts on that subject. Also here are some important links for you to peruse. We do know exactly how you feel. Once you are healed and begin a treatment plan I promise you the fright will turn to fight.

http://cholangiocarcinoma.org/the-disea … diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/


(3 replies, posted in Introductions!)

Dear Laura, welcome to our family where you will find the best support for CC. It may be too soon to realize this but you got the best treatment by having surgery. So, you get a big YIPPEE from me to you. I also want to say what a fabulous surgeon you had in that he realized he could not handle this surgery and sent you to someone who could. It is a long recovery but take each day at a time and one day you will wake up and say, I really feel good today. I am glad you are trying to be "up" as attitude means everything in healing and going onward. BTW October 1 is my anniversary date for a cancer surgery and this is 5 years so I believe OCT 1 is a winning date. Thank you for the nice things you said about our members they are fantastic. Yes, that is life, the good, the bad, the ugly and we even throw in a bunch of jokes here and there. Laughing is good. Please keep us updated on your progress as we truly care! Again YIPPEE!

Catherine, sorry about that, I just assumed. Sometimes I think a picture of a Mom could just as well be her daughter. My Daughter's EX used to joke that when Robin and I were together he always felt like he was standing in a stereo!

Gavin and Duke, this dummo sitting at my computer actually figured the minus sign herself but thanks for the help. What a difference that Plus sign can make.

Gavin you never answered me about the Packers this year. Are you still for the Bears? Did you see that picture of a Bear friend of Aaron Rodgers? He is standing with Aaron for a pic and he tells the press that the Bears are getting a new quarterback!!!!!!!!!!!  Cute.

Hi, Nancy and thanks a ton. You are all the very best, I can feel the love! While we don't hope for anyone to have to join this Board we sure have the very best in the World right here!

Marion you are a genius, I never knew that about control + and it really works great! Thanks.

Thank you Catherine and may I see it is good so see you almost in person. Love the Avatar.

Hi, my Randi, girl! Thanks so much. Hope everything is well at your end......my end needs a lot more healing. Sorry, couldn't resist that. But we plug along.  OMG I am using all the wrong words here!!!! Good to see your smiling face!

Thanks, Melinda. Going to celebrate at dinner tonight with my daughter, Robin and 2 of my Grandkids. Hope things are going well in your part of the world!


(6 replies, posted in Introductions!)

Dear Michelle, welcome to the best place to be for CC support. May I ask where you are being treated? It is very important to be at a hospital/ONC who has treated CC before. The other very important thing to know is that knowledge is our best tool for fighting CC. If there is something you wish to know right away we have a Search engine at the top of the page and just type in a word and previous posts will appear about that subject.  Do not worry about your Stage as we have had many members who were DX at stage IV, had chemo and were able to have surgery. Remember that attitude is everything and once you see that the chemo is working or even a different treatment plan, your fright will turn to fight. We are here for you, so please keep us updated as we truly care.

Thanks Darla and Cillie. My GP keeps telling me my LABs are perfect and I am doing excellent for my age. It's the darn Remicade that is jinxing me. I see the GI on Halloween and I may try something else  as it is now attacking my joints. Painful! And I was never one to hang around joints!
HEY! Duke, how did you know about my dancing??? When I was a teen, oh about 14, American Bandstand was all the rage and in Kansas City, MO where I was born and raised, I was on the local Bandstand show. Poodle skirt and all. But, Teddy was the real dancer. Not so good at slow music but boy could he Disco. That little guy was all over the floor like the Penguin in Happy Feet. One night he did the splits in the end of Mac the Knife and I almost lost it! Good thing he already had his kids.


(57 replies, posted in Members' Cafe)

That was beautiful and it certainly describes our Percy. I am so very proud to have called him friend. His wisdom and his kindness touched us all.  Thanks for the posting, Marion and thanks for representing us all, Stella. I know it could not have been an easy thing to do.  We miss him but will never forget.

Duke, actually the 5 years has been easy as there is no chemo/treatments for the GIST. Nothing. If it returns it must be removed then a chemo pill is given called Gleevac. UGH! It's supposed to be horrible. I am perfectly healthy except for the colitis. That has kept my mind off the cancer.  I figured that G-d was not going to give me more to fight. What I cannot figure out is if G-d and Teddy are keeping the cancer away.....and T is helping the Packers this year....why the heck can they not cure the colitis! I want my life back! But, then I hear things that make me grateful for what I have. Like I say, I am truly blessed.

Thanks Susie. Now if they can just fix my other parts I will be like a new woman. I tell you all that positive thinking does work. I also put forth a positive effort not to stress about anything. It works.
Hope everything I good at your corner of this world.

Julie, my friend, I kind of felt it was not back but it's always good to hear it. Maybe I can go to yearly scans now. Hope you are having a great time.

May I give myself a big yippee?
Quite a few of you know I have had my own rare cancer and wanted to give you an update as it has been a while.
In Teddy’s last year with CC it was discovered that I had a rare cancer called a GIST in the stomach. It reacts somewhat like CC as you don’t know you have it until your husband asks if you are carrying twins. Asked in the nicest of ways. I went to the GI and saw his face change when he pressed on my stomach. I always tell him now to look the other way.  He ordered a PET and it lit up like Paris at night. My surgeon said I needed surgery immediately but wanted a colonoscopy first. Wow, what a major call that was. Gastro Intestinal Stromal Tumor that’s another thing in common with CC, hard to pronounce.  The Gist was the size of a small cantaloupe and on my right side was a benign tumor on the intestine and they had to remove a foot of intestine. October 1st was my 5 year anniversary cancer free and I had a CT Scan last week and I am totally cancer FREE! I never worried about it as I was too busy worrying about Teddy. Still not worried even though like CC it can return. I have had CT scans every 6 months for 5 years. Now I light up like Paris. But, I am very Blessed.

Gavin, my son from another mother, just have to say...what about the PACKERS!!!!!!!!!!! Now, that's what I'm talking about!!! They made little kittens out of the Panthers.


(2 replies, posted in Members' Cafe)

Hi Dukster, I have been posting since this morning. So I think Rick has us in good shape again. Thanks Rick.

Hi, Malcom, so good to see your smiling face on here and more than that so great to hear your good report! Five years is nothing to sneeze at! Thank you for checking in with us and glad you had such an amazing trip. Keep up the good work and we look forward to hearing from you again. YIPPEE on your November Anniversary!

Dixie Vicki, glad to hear you are doing so great ! Will be looking for your report after you meet with Dr.  Javle.  I had to chuckle as when I saw his picture on our Medical Board.  I thought, oh wow he is a twin to my GI Doc. I even had the GI pull up the pic and heard him yell out, "He does look like me! I have to call my Mother". It was later I found out they we not identical as my GI is 5'6 and Javle is 6'2"! The do have the same face though. I looked up the Kahler hotel right across the street from  Mayo as a lot of people stay there and have through the years. Same prices as yours. Did you tell them you were a patient? Did you take a kitchenette? Would they take AAA for a special rate? Well, girl, keep on keeping on, cheering for you!


(4 replies, posted in Introductions!)

Dear Sandy, welcome to our family and the best place to be for CC support. First Congratulations on Hubby's surgery, but, oh my goodness he has really been put through the mill. Glad to hear he is feeling a tad better. You are right taking it day by day, one step at a time. One suggestion, would it be helpful if he had a walker so he could rise up slowly and stand for a few minutes before walking? Normal will come again it just takes time with such a huge surgery and then complications. Does his ONC know about the blood pressure problem? I am wishing for you both to have a more peaceful existence and may the rest of his recovery be without incidents. Much good luck to you both and please keep us updated on his progress as we truly care.


(5 replies, posted in Hospitals)

Duke, many thanks for that fine report on Mayo. One thing I also got out of your post is that a patient must feel so secure there. I am really amazed at Dr. Albert's nurse practitioner and I love that they both knew about our CC Board. Stupendous post, thanks so much.

Dear Rose, Fantastic and welcoming news. I believe you are our first CC patient on this miracle treatment. It does seem if we can hang in for a little time new treatments are coming forward and for us you are now our Pembrolizamab/Keytruda Heroine. Someone always has to be the pioneer and I am thrilled it is working so well for you. This is so exciting and looking forward to more good news! HURRAH for you, Rose. I love your name as my Sister's middle name is Rose.

Very cool! But, I DID see you and I might say you are looking good!

Dear Vicki, Gavin knows me too well! I have been on and off steroids for 4 years for ulcerative colitis. My problem is this....with the puffy face I have no wrinkles, I will be 75 in April, but its hard to get make up on right, sometimes with clown effects. BUT when I am off the steroids  oh boy do the wrinkles come out and not just there! Everything is a trade off and we can just hope for the best. Also with my steroids I can't stop eating and facial hair has a tendency to grow! But in all honesty I really don't like all the side effects. Guess it is just a necessary evil. My steroids don't make me tired but yes, I have foggy brain. I also am happy that your port went in well. Best wishes on it all!

Dear Fight CC, welcome to the best place to be for CC support . First of all CONGRATULATIONS on your successful surgery. Or as I usually say YIPPEE! I am so glad that you feel daily improvement, best sign and news one can receive. I hope you can get back to work too even if it is to start slowly. Please keep us posted on your progress as we truly care.

Dear SUZZAZ. welcome to our family as here you will find the best support for CC. First of all YIPPE and CONGRATULATIONS on the resection as many cannot have it. I found this Board when my husband had surgery, a Whipple, for CC 8 years ago. So we are young as a family but growing by leaps and bounds from where we started. We so understand how you feel and please  know that we do not listen to stats or numbers as everyone is so different. We have had quite a few members  who have experienced great success.
Here are some sites you may want to see:

http://cholangiocarcinoma.org/the-disea … diagnosed/
                                                    Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
                                                   Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/
                                                    Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/

At the top of the page is a Search button and you can enter any word and different posts will pop up on that subject. Be strong don't jump ahead and please keep us updated on your husband's progress. Keep thinking of that white picket fence!