1

(4 replies, posted in Introductions!)

Hello, Julia and WELCOME to the best place to be for CC support, but sorry you had to find us. Wow! Talk about that roller coaster ride you sure did get a bunch of tickets. I am sending you the best vibes and juju. I love your attitude and it will get you far not only in CC but what a role model you are for your fabulous munchkins. I cannot help with your questions about PSC and IHCC but wanted to welcome you and I know others will be along to answer the above. Hang in and hang on and please do keep us updated as we truly care.

2

(5 replies, posted in General Discussion)

Hi CC Family! Just wanted to let you know I will be off from 5/25/ to 6/4 as I will be going on a cruise. First vacation in 5 years! It is called getting one's life back and feels so GOOD even though I am really pushing this! Please stay good and wishing you all the very best. See you on June 4th!

3

(12 replies, posted in Introductions!)

Dewar Mariza, I am sorry to read about your Dad and please accept my humble and deepest sympathies. Your Dad will always be around you as Father's don't really leave their children they just go in to the next room.

I’M  STILL  HERE
I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets the ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I'm the first ray of light when the sun starts to shine,
And you'll see that the face in the moon is mine.
I'll whisper your name through the leaves on the trees,
And you'll feel my presence in the soft summer breeze.
I'm the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I'm the smile you see on a baby's face.
Just look for me, I'm every place!

4

(8 replies, posted in General Discussion)

Sharon, I add my sentiments to what you and Phil are going through. I just want to say that if you want to prepared I do have a list of the 10 signs the journey is nearing an end. I would email them you if you send me a note through the site here. I found that the more we know and understand what is happening that it does ease up the journey and helps with the frightening part of not knowing what to expect. Stay strong and hang in there and all our spirits are with you both.

5

(3 replies, posted in Clinical Trials)

Dear Bea, this is pretty good news and I am sure that your wonderful attitude helps things along the journey. Wishing you the best of luck on the next Scan and thank you for the post on something that may soon be available to others. Please continue to keep us posted on your progress!

6

(54 replies, posted in General Discussion)

Dear Meghan, I am so very sorry to read about your Mom. I just feel that Mother's never leave their children and are a heartbeat away in the next room. Please accept my humble condolences.

I’M  STILL  HERE
I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets the ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I'm the first ray of light when the sun starts to shine,
And you'll see that the face in the moon is mine.
I'll whisper your name through the leaves on the trees,
And you'll feel my presence in the soft summer breeze.
I'm the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I'm the smile you see on a baby's face.
Just look for me, I'm every place!

YEA! Kathy! We LOVE the word STABLE! Keep up the good work!

Dear Tiah, HAPPY birthday to your MUM and what a great Birthday gift she has received. Wishing her a wonderful and a much healthier year!

Dear Jack, ATTITUDE is everything and it will not only help you it will help everyone who reads your posts here and on your website! Thank you so very much.

10

(49 replies, posted in Members' Cafe)

Dear Catherine, thanks for the family update. You family is really quite lucky as they have a unique way of dodging all the bullets! You Mom is a prime example. Your daughter sounds like she was in quite a scary situation and thank goodness she is home! Dad hopefully will keep on improving and hubby will get through! You are an amazing family and wishing everyone the best and keep being each others cheerleaders!!!

Dearest Amy, I am so very sorry for the loss of your husband. It is bad enough getting the CC diagnosis let alone loosing a loved one so quickly. Please accept my heartfelt condolences. In time it is true that the grief subsides and the good memories take over. 

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.

12

(8 replies, posted in Members' Cafe)

I am so very sorry to read this about Ron. I know it is so sad and scary but you never know how strong you are until "strong" is the only choice you have! When Teddy and I reached this point we did everything we could to "ease" in to the end of this terrible journey! We would think of Passing not as the end but as the beginning to eternity. We made the most of it and got through it by even adding humor. Every time a new Nurse would come Teddy would say we wee on our honeymoon.
Dakota, I have a list of 10 signs that the end is near. I found it to be very helpful and it took a lot of the fright away. From my own experience I feel the more we know the less frightening it is. If you would like a copy just send me an email through the CC site here and I will send the list to you. We will all be thinking of you and sending prayers for Ron to have a comfortable journey.

13

(14 replies, posted in Introductions!)

Dear Lynn, when Teddy had to make the decision of to chemo or not he simply asked the ONC for a "guesstimation" of how much time the chemo would buy him and the ONC said a month. That was after a 5 year tough fight. Teddy said he would rather have quality time (some kind of quality, right?) Then he asked the ONC what would you tell me to do if I was your Father and the ONC said, not to do it. You and Greg should have a heartfelt talk and then take what he feels to the ONC. No question is silly so when you next see the ONC ask away! Like chemo vs no chemo what are the guesses to time limits. We know that nobody can really say when it comes to timelines but according to what everything shows the ONC may be able to help in your decision.

14

(38 replies, posted in General Discussion)

WONDERFUL! Kernos! It would be so exciting if you and the other patient on Keytruda could meet. There is almost no better feeling than to meet a fellow  CCer to know you are not alone in this. And of course it will be amazing and awesome when we read that the Keytruda is working! Happy dance time! As always wishing you the very best!

15

(11 replies, posted in Members' Cafe)

It all sounds great, Randi and I am so very happy for you and for me! LOL

This guy is my age and when T and I first moved to Sun Lakes he and his wife were the first couple we met. She passed in October. Going on an Alaskan Cruise the end of May with his daughter and son in law. Randi, I have learned another life lesson. You can love someone to the very depth of your being and they have to leave but when the timing is right you learn that there is still love left in your heart for someone new. It's a great feeling and I am so thankful and blessed to have had 2 such men in my life. That chat line sounds great! Miss you too.

16

(11 replies, posted in Members' Cafe)

OMG! A voice from Xmas Past! My Randi girl! How the heck are you? To make it short but sweet. I got rid of 2 benign head tumors but gained a boyfriend! Hope you are doing well and how is your offi8ce doing? So ve3ry good to see your great smile!!! Thank you!

17

(14 replies, posted in Introductions!)

Hello Lis and a big welcome to you as well. Cyber space is so awesome as I feel you are just in the next city! can you tell us a little more about your Dad. I am happy to hear you are seeking other opinions since this CC is still so very rare. What form of treatment are they offering?  You never know how strong you are until "strong" is the only choice you have!

OOPS. Sorry, Should have reread your first post. Let me try to remember what we asked after Teddy's Whipple. I would think the basic thing would be what kind of follow up care and treatment the ONC would advise. I remember that the first 2 years were spent with Scans every 3 months. This was 10 years ago and they said no chemo at that time as he had clear margins. Guess there are 2 schools of thought on that even now. To chemo or not is one of the biggest questions, always. You might ask what could happen with chemo vs without chemo. This is hard as so many things have changed in 10 year, thank goodness. You might go to our search engine above and type in 'questions for ONC'. Perhaps you can find some ideas there.

Megan, you posted just right! I don't think we encountered it until we heard what the ONC had to say. Suggestion: Take notes so you can recap and from the notes may think of questions for the next time. What you want is the norm. Like, Treatment suggestions, will surgery be an option. Please  let us know how it goes. Best of luck!

20

(1 replies, posted in General Discussion)

Pat, Great and interesting post on the pesty bile duct. Glad you are still doing so well, you are our HERO especially for giving all the hope you give to others. Keep on keeping on as life is for the living!

21

(24 replies, posted in General Discussion)

Kris, def. let the ONC know what is going on. Enough already. Perhaps buy some stock in T Paper!

22

(12 replies, posted in Introductions!)

Dave, YEA for heading to MSK! That is great news as when one gets enough opinions to satisfy themselves they never look back and use the words should have could have. If you feel you get more nutrition in you just ask them for some nutrition shakes. Can't wait to hear what MSK says.

Patty this sounds like you are in essence a Miracle as you keep slamming them down one at a time and then you are lucky enough to go on to a new treatment. Just keep kicking that CC to the curb as more treatments seem to be popping up all the time now. You have a great spirit and outlook and that my dear, is just what you need to win! Looking forward to your next PROGRESS report!

24

(14 replies, posted in Introductions!)

Dear Lynn, welcome to our remarkable family but so sorry you had to find us. It sounds like all the right steps are being taken and I want you to know others have had the same diagnosis and chemo has helped.
We don't listen to statistics, we get a couple of opinions as different Docs see things differently and I know how you are feeling right now, like you were hit in the stomach with a base ball bat! 
For me and Teddy we had humor on our side which got us through a lot. We made the most of our time and he would tell everyone that we were on our honeymoon. I would suggest talking to your own Doctor and see if he can give you a mild relaxant to help you for awhile. You never know how strong you are until "strong" is the only choice you have! You are not alone now so just call on us whenever you need us. Please keep us updated on Greg's progress.

Morgan, it sounds like you are in good aggressive hand but never discount a 2nd or 3rd opinion! Very important to keep that in mind so that you never second guess AND different ONCs see different things. At least you seem to have a lovely view there. I so understand how you feel. Please keep us in your loop.