Googily, I have met Kris and she is as kind and fun as she is "tall". She also looks like her picture here. She is excellent company and a real champion of a survivor!

Hi Brigitte, I am sorry to hear this but YES ALWAYS mention anything new to the ONC. There may be something you can take for the pain but so very important to tell an ONC everything even that which one would think was very small. I sure hope he can find something to help you through the aches.

My Dear Nancy, try not to look back, I KNOW you did everything you could. Mom would want you to look forward and in time what was, will fade and happy memories will take over. You did everything that you possibly and humanly could but unfortunately as much as has been accomplished for CC is still not enough. Your Mom knows what you did and how much she was loved. Loving is the most important part and you certainly showed her that.  Grief takes it's own time but one day when you are ready you will realize that Mom is with you all the time.

Dear Jack, welcome to the bumps in the road situations. Sorry your FIL had such an 'exciting?' Thanksgiving. Not!
When my Teddy had biliary drains they had to be changed every 6 weeks to 3 months. They can get clogged or infected so easily. He would get a high fever, up to 104 with chills so bad I would put 3 blankets on him and then crawl on top. After the 1st time I knew to call the ambulance and get him to ER. They would do an IV of Levaquin which knocked the blood infection right out. They always did a blood culture to make sure it was an infection and the ONC said Levaquin can knock out anything.
As for the neulasta? or nupogen? We have a search engine at the top of the page and if you type in a word posts will come up on that subject. Wishing you and the family the best and smoother roads.

Dear Ben, you made me so happy today when you wrote the word "stable", love that word. I am hoping more and more members here continue to have good words to write. I so agree with you about the magic bullets. Wishing you and your wife an excellent Holiday Season.

Dearest Nancy, I am so very sorry to read this about your dear sweet Mom. She fought with so much grace and dignity and getting to know you through your emails, I know that you are a special, courageous Daughter. I don't believe the Moms every really leave their children and she will always be around you. One day you will find yourself putting all the hard memories behind you as all good memories will take their place. You are a very special lady just like your Mom.


Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   
For everything beautiful that you see
will bring a memory of me.

Yea! Joe. So far so good and that is a good post. Tired goes with the territory.  Here's to Mama to keep up the good work! Love the post.

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(61 replies, posted in Introductions!)

Dear Olivia, welcome to our remarkable family and the best place to be for CC support.  More often than not chemo is the first line of treatment for CC. Many have gone this route and on to successful surgery which weird as it sounds is the point all want to get to...we love the word surgery! Below is a site you may find helpful and please keep us posted on your progress. When you feel up to it we would love to hear some more about Olivia.

  http://cholangiocarcinoma.org/newly-dx/

Dear Julie, You know how I feel and I know you have the strength to make this trip to Mayo and have them fix what is wrong. Yes, you have been through so much and have already crossed many bridges and I am convinced you will cross this one as well. Take it all one hour at a time and you will be the little engine that could. Tell the little man, Robert that you are that little engine. Just one more day and you will have answers. I am with you all the way!

Dear Megan, welcome to our remarkable family and the best place to be for CC support.  If you type a word in to our search engine at the top of the page posts will come up like that subject. You might want to type in  Moores Cancer Center to see if anyone has posted about that Center. 
Yes, It would certainly be easier if Mom was by her daughters both mentally as well as physically.
Hoping for the best outcome for Mom from her Chemo. We have had quite a few Stage IV patients who were able to bring the tumors down in size and then be able to receive surgery which is the ultimate goal. Below is a site you may find helpful and please keep us updated on Mom's progress!

http://cholangiocarcinoma.org/newly-dx/

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(1 replies, posted in Members' Cafe)

After preparing Holidays for 56 years, after this last Thanksgiving (had 15 people here), I have passed the torch forward or if you will the turkey leg. My son and daughter are taking over the holidays and they are right to do this. They WILL still ask me to make their favorite things. So, I asked my daughter, "And are you taking away my car and license as well?" Robin answered, "No, Mom, we should have done that 10 years ago!" Hope you all had a great Thanksgiving. I also made a request at Dinner that EVERYONE make an effort to compliment a stranger at least once a day. Just trying to make a little difference catch on.

Dear Danielle, welcome to our remarkable family and the best place to be for CC.  You are headed in the right direction with either Sloane or John Hopkins as both are experienced with CC. Please do not listen to nay sayers and statistics as we have had quite a few patients on here who were DX at  Stage IV and told no surgery. After chemo, usually GEM/CIS the tumors were shrunk enough to have surgery. Yes, I would keep the John Hopkins appointment. You are just beginning but I swear that once treatment begins the fright will turn to fight. The only thing I can tell you about hubby is what mine told me when he was DX. He steeled his mind for what lay ahead and asked me to be strong for him. I was and we tossed in lots of humor and that really carried us through the next 5 years. You also have age on your side, my husband was 73. So put on your pink boxing gloves toss them with glitter and fight away.
May I ask a favor of you to delete your duplicate posts or posts to you will be highly scattered instead of running a nice long thread under one post. Below is a site you may find helpful and please keep us up to date on your progress.

http://cholangiocarcinoma.org/newly-dx/

Oh, Kris, stupendous news about no cancer sighting!!! I am over the moon for you. You are such a good model for hope and miracles. My wish is for everything to continue in the right direction and wish for good news about the eyes! I just want it all to come together in the best way cause you sure deserve a great break!

Dear Allison, very GOOD choice. You definitely do NOT want to be where there is no experience with CC. Princess Margaret is a good decision. We are our best and own advocates. I always feel, go with your gut and do it quickly, you will not be sorry. Best of luck with your plan!!!!!

Wowser, Barbara! JACKPOT! Congratulations on a job well done. Holy moly! You must be so proud. Also enjoyed the pictures and thanks so much for sending this phenomenal news our way!

Dear Joe, try not to think about next Thanksgiving and focus instead on the here and now. Just wanted to mention to have your Mama 'graze' on food all day rather than large or full meals. In the long run she may eat more that way. A CC patient will look at a full plate of food and loose their appetite at the thought of eating all that in one sitting. Also I found that comfort foods work very well. Soups, omelets with cheese in them, even buttered noodles, puddings and jello. Turkey sandwiches work well. You get the idea, I am sure. Please keep us updated on how your Mama is doing.

THANK YOU Billy for reminding us of our benefits from Amazon! So important and a very timely reminder!

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(1 replies, posted in Members' Cafe)

While getting ready for my 15 guests today I had a thought about a promise I will ask them for today that I also want to share with this family of mine:

Make a promise today that for the next year you will give a compliment to a stranger every day.

I have been doing this for a few months and boy! The joy it gives me. And it makes others feel good as well.  It cost nothing to put a smile on someone else's face!

Marion, WOW! Every time I see these articles about Ulcerative Colitis and how bad mine was, I thank G-d I finally did the Colostomy and got my life back. Scary even thinking what could have happened. I know this is not CC and I am grateful for that but would like to say to anyone who has UC, get it taken care of, it sure 'ain't' worth tempting CC.

Dear Brigette, how rude of them. Things like this really get my dander up. I would talk to the Manager of the department or the Hospital and tell them what happened and I would switch to a new team. I have never heard a story like this especially at MDA and it is NOT right. You are going through enough without having 2 'robots' taking care of you. You deserve so much better!

Wonderful race and very proud of you. Great job well done even if you got a little wet! Looks like everyone was having an awesome time! HURRAH for you!

OMG! Gavin, happy haggis! But if you don't mind I will take a pass on tasting it. I am so busy as 15 are coming tomorrow. Phil is smoking a huge turkey and I am doing most of the rest. Have a HAPPY what ever you want to have! Love to my Son from another Mum

Dear Megan, YEA!!!!!!!!!!  What a wonderful Thanksgiving it will be for your family. Great news and wishing for it to continue all in an upward motion! It truly is a good Thanksgiving!

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(4 replies, posted in Introductions!)

Dear Victoria, welcome to our remarkable family and the best place to be for CC support. It sounds like you are doing all the right things. My husband was Stage one 10 years ago and had a Whipple surgery. Surgery is the only sure cure so far. Surgery is a word every CC patient hope to hear. Your husband has such a great chance as they caught the CC early and his age is an advantage. I am so glad the surgery is so soon. This monster can grow quickly. It is true that the surgeon never knows what he will find until he "gets in there". With all that said I still feel you have a lot of good things going for you! Try to enjoy your Thanksgiving and I will be sending prayers and lots of good spirit and there will be so many of us from right here in that surgery room. Well, you know what I mean. Please let us know how everything goes and just wishing you the very best of everything. Below is a sight you may find helpful.

http://cholangiocarcinoma.org/newly-dx/

Hi Scott, yes we did make it and walked around the downtown. Loved it. I hope you are doing well and a Happy Thanksgiving to you and your family as well!