WOW! Barbara, that is great and yes you work with wonderful people!! Thank you again, you are terrific! Uh, snow? What does that look like? In Phoenix, we have to travel 2 hours North to see snow. Thank you so very much again for all your efforts!

Dear Daisy, I am so sorry that reoccurrence has happened but so glad to hear your Mom is feeling good. And a Cruise on top of that! I know we have had good reports on Keytruda and it is so good that her ONC is willing to be aggressive. If you type Keytruda in to our Search Engine above, posts will appear on that subject, Sounds like you are right on top of things, a wonderful daughter and a great advocate. Wishing Mom the very best on what ever is decided and of course let us know what you do.

Dear Brigitte, Congratulations on your Post as it seems there is more good news than not. I feel you will get that other lesion to "obey". One day at a time is the way to go  Shrinkage is a good word so put those pink boxing gloves on and sprinkle them with bling and knock it out of the ring. Good to hear from you and keep up the good work!

Dear Susan, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the CC diagnosis of your husband and that you had to join our remarkable family. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time and kind of like being hit in the stomach with a bat. Here are a few items that may help you get through the first leg of the CC journey.

Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.

Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma. May I ask where hubby is being treated.

Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.

I want you to know that we have many patients who were Stage IV at diagnosis and ended up with surgery, our favorite word. What chemo is he on?  Please do keep us updated on your husband's   progress as we truly care. Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/

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(73 replies, posted in Introductions!)

Dear Melanie , Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about your diagnosis but know you are at the best place to be for CC.  Congratulations on your clean scans. Great news and we call the wait before the scans, scanxiety!
Knowledge is the most important tool we have to fight this monster with and apparently you are doing quite well. 
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma. Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
We do have something in common, my Sister's name is Melanie. Great name. May I ask what Mayo did to bring you in a short time from spreading CC to clean scans? That is quite a remarkable jump. Please do keep us updated on your progress as we truly care. Also very happy you decided to join us!

And while we are sad you had to find us, we are so glad you are here as well! What a great family we have!

Ali, if you Google Blue Scorpion Venom you will find some interesting sites!

HAHA, Marion....Good Luck   I can't count how many times I have told you I was taking a week or 2 off and after 2 days came back on!!  I find it so addicting (a good addiction) and can't seem to let go. Like I say though, it is purely selfish as I love the way it makes me feel!  Being the oldest here, I kind of feel like a mother bear! Yeah! I can growl like a bear and then give bear hugs!

Marion, if I may continue your last post above. You are so involved in so much with CC.ORG and I am amazed you even find the time to say Hello. We have so much that depends on what you do and will be doing, just do it as I know how valuable your other services for CC.ORG are.  Bless you and all you do and I love you to the moon and back!

Dearest Gavin, So sorry to read about your Aunt.  Was that your Mum's Sister or Dad's???

Dearest Catherine, I am so very sorry to read this about your Dad. I sincerely hope he has a more comfortable journey and wish him G-d speed as another angel in G-d's care.
Please take care of yourself as  as well and take your time as we will welcome you back with open arms when ever you are ready! Sending you much love and prayers.

Joe, I am very sorry to read this news about your Mama.  Like Beatriz said everyone is different and it is a matter of finding the right combination.
I am also a huge believer in listening to  one's gut. Above all else I would seek another opinion as different ONCs see different things and have other ideas. Hang in and hang on , Joe, you never know how strong  you are until strong is the only choice you have, wishing the best for all of you!

Oh, April, what a fabulous report. LOVE the GREAT news! Spring is around the corner and so glad to hear your are springing forward in the right direction. If I could, I would turn cartwheels for you!  Keep that great news coming  and it was good to hear from you and I can see your smiling face!

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(10 replies, posted in Introductions!)

Karen, wishing and hoping for good scans on the 28th. Karen, you have something so special, your attitude, and it will get you far. Your skiing may be downhill but I will bet with the CC you will conquer every mountain! Please do keep us posted and wishing you the very best.

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(9 replies, posted in Chemotherapy)

Dear Summer, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about your diagnosis and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.

Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.

Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.

Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.

Please do keep us updated on your progress as we truly care.

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(4 replies, posted in Introductions!)

Oh, fantastic Mary!!!! So good to hear from you. It was so wonderful meeting you and sharing meals with you! Don't be a stranger now and visit us often and PLEASE keep me updated on how you are doing. Everybody, listen up, this is one of the sweetest ladies ever!

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(4 replies, posted in Introductions!)

Dear Mary, First of all CONGRATULATIONS on your surgery, our favorite word. I too was at the conference and met a Mary from Maryland. Is that you?? It was so fabulous and awesome. Now that you jumped into the pool here don't be a stranger and please keep us posted on how you are doing. You are a hero!

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(2 replies, posted in Introductions!)

Dear WillC, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about your diagnosis and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.

Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.

Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.

Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.

Here is a site that may be of help:  http://cholangiocarcinoma.org/newly-dx/



Please do keep us updated on        progress as we truly care.

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(11 replies, posted in Introductions!)

Dear Christina, thank you for the update on your Mum and so glad that "things" have been started. Please tell her Doctor about the light headiness she is having. Since no treatment has begun that would cause her to feel that way it could be anything. With this strange monster the Doctor needs to be aware of anything different that is happening.  What I don't understand is the length of time elapsing to get a treatment started. When my husband was diagnosed treatment began immediately like in a week. Cholangio waits for no one.
I am happy that Mum is mentally doing better now. It takes some time to get used to this rare and strange Cancer.
As to what is normal? Welcome to your new normal that no one wants to have. The best advise we can give is to just take each day, one day at a time. Hang in and hang on and know that we have had quite a few members here who were Stage IV and are doing quite well. Hope and Miracles!

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(2 replies, posted in Introductions!)

Dear Melissa, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your Husband and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Kind of like getting hit with a bat! Here are a few items that may help you get through the first leg of the CC journey.

Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.

Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma. Dana Farber is a good place to start.

Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.

Here is a site you may find helpful:  http://cholangiocarcinoma.org/newly-dx/

Please do keep us updated on hubby's  progress as we truly care and best of luck next week!

Jessica, we have quite a few CCers even Stage IV, who were told they could not have surgery and after the right treatments they have had successful Surgeries. you will see that Surgery is our favorite word followed by Stable. This is why it is so important to get other opinions. We call the nerves before scans 'scanxiety'. Much good luck on the new scans and I will be heading your cheer leaders squad.

Jess, what a fabulous post!!! I have been on here from the beginning and have never seen a post like this. I agree vanity does make one feel better no matter what the problem is. How can we feel good if we feel we look bad.
You just keep on sharing all you want, I had never thought of this side of it to feel better.
BTW I am originally from KCMO and I know you have some great hospitals in Topeka. There is also a great one experienced in CC in St. Louis called Barnes Jewish Hospital and they have a good reputation for liver transplants and resections. Thank you so very much for these interesting and neat ideas. I don't have CC but I may try some of them anyway!

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(13 replies, posted in Introductions!)

Dear Wyatt, I am so very sorry to read about your Dad. Know that he is whole again and at peace.

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!

Dear Derik, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your Grandmother and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma as it is still very rare. Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
My husband began his journey at 73 yrs. old and was able to have a Whipple surgery and fought the good fight for 5 years. His CC started in the same area that your Grandmother's is. Because of all her side issues I would definitely seek out another opinion from a Hospital who has experience with CC.
May I ask where you live and perhaps we can then give some suggestions where you might get another opinion. It is a good thing that they did put in stents as that is the only way to give her relief from the jaundice.  Please do keep us updated on your Grandma's progress as we truly care.

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(7 replies, posted in Members' Cafe)

One of the best was seeing my Cookie again!!! Laughing and fun as just like our last visit. Don't forget to let me know what is going on.