1

(16 replies, posted in General Discussion)

YEA! Can't wait to mete h you, Pat. Safe travel to each and everyone.

2

(13 replies, posted in Introductions!)

Dear Victoria, WOW! What a journey you both have had so far and I sure hope a smoother road is right around the corner. Statistics, a word we try not to bank  on as everyone seems to be so very different and it does sound like you are in good hands in Seattle. I wish I could be of more help but I am sure others will chime in here. Keep on doing as you are doing and I am wishing you both the very best.

3

(64 replies, posted in Introductions!)

Dear Bev, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of your Mother  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 be useful in helping you get through this first leg of the journey.

Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please 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 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.

I hope you can get a consult at MD Anderson. As for trials not sure for your Mother due to her age but I am sure someone will check in here with an answer.
Please do keep us updated on your Mother's progress as we truly care.

Dear Deanna, WOW! What a story of courage and bravery. I don't know the Medical system in Canada but can you possibly get another opinion on what is happening? You are both awesome and I am wishing you the very best of everything but I hope that perhaps another Doctor could find something to do for the pain. Thank you for sharing your story with us and I do remember Doodle bug!

5

(55 replies, posted in Introductions!)

Dear Googily, best of luck on Hubby's radiation and sure hope it does some good for him. The way you 2 plug away at this is amazing, you are a 'poster couple'!

Catherine, just want to send out the best wishes for your Mom's upcoming scan! Crossing everything I own even my eyes!

7

(16 replies, posted in General Discussion)

Hey, everyone, I will be the short older lady with the white hair. And at 5' short I will be with a man who is 6'. The ODD couple!

Dear Ali, at the top of the page is a search engine and if you type in Xeloda many posts should appear on that subject. I am thinking you would get some good responses about effects and effectiveness. Best of luck.

Dear Julia, I am so sorry to read about your dear Sister. I happened to get up during the night and saw this and sent the "List" right out to you. We are all here for you and I hope the end of her journey goes peacefully. We are here if you need us.

Dear Alikemal, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of your Mom  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 be useful in helping you get through this first leg of the journey.

Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please 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 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.

Most of the time Ascites are drained which helps to bring comfort to the patient. As for diet sometimes it helps to have a patient  'graze' throughout the day rather than sit at a plate FULL of food. I found that my husband really took to comfort foods like soups, pasta, omelets, puddings, rice and things like that. Please do keep us updated on Mom's  progress as we truly care.

11

(7 replies, posted in Introductions!)

Dear Bev,  Welcome to our remarkable family and the best place to be for CC support. So 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. Here are a few items that may be useful in helping you get through this first leg of the journey.

Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please 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 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.

I have not heard of "trapped" wind but I believe you gave the best comment at the end of your post and I will relate it to CC....and that is the fight of war and peace!

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

Dear A Brown,  Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of CC and that you had to join our elite group. It sounds like you are doing good and congratulations on the Whipple as surgery is one of our favorite words.

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

My husband had a Whipple 10 years ago and it is a bit of a slow recovery. One of the weird parts was the loss of taste for certain foods he loved, like chocolate, yes, especially sweet things. It was all worth it as in a few months he actually was able to go back on the golf course! 

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

13

(16 replies, posted in General Discussion)

Thank you so much, Maiki. We will count on meeting you at next year's conference!

14

(16 replies, posted in General Discussion)

Hi Michelle, we will be meeting up for sure! So excited I wish is was this weekend! You are a super hero and I have a feeling you will always be a great example for others fighting this monster fight!
See you soon!

Oh, Debbie, that is so beautiful and prompted "happy tears".  What a wonderful young man you have for a son! Thank you so much for sharing that beautiful post.

16

(7 replies, posted in Introductions!)

Dear Stephanie, Welcome to our remarkable family and the best place to be for CC support. So 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 be useful in helping you get through this first leg of the journey.

Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please 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 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results. You are already a pro as you have a plan and a good one at that! Please do keep us updated on your       progress as we truly care. Below is a site you may find helpful:

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

17

(16 replies, posted in General Discussion)

AND, my son from another MUM, next year for both of us!!!!!!!!!

18

(391 replies, posted in Introductions!)

Oh, Matt, how awesome and wonderful! I am looking forward to meeting you in Salt Lake City! What a great story you have and may it continue until you are old and gray like me!  LOL

19

(56 replies, posted in Introductions!)

Dear Lynn, Again, I am so very sorry but know that Greg fought a great battle with grace, dignity and yes, humor. I am truly happy that he got to see his boys as I felt that is what he was waiting for. Take care of yourself now and drop in to visit us if you need us or just to say hello! Sending you love from across the waters.

Dearest Lynny, I am so very sorry and please accept my humble condolences on the end of this journey. Please find some comfort in knowing that Greg has ended one journey only to be starting one that will last for eternity until you are together again.
Think of this poem as Greg sending it to you:

If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.

21

(16 replies, posted in General Discussion)

I am so very excited with my decision to attend the Cholangiocarcinoma Conference in Salt Lake City Feb 1 - 3. It is my dream come true to be able to meet patients and caregivers and to see Marion and Kris again, plus meeting so many others who have helped us to become the awesome
fighters against CC. The more the merrier and hope to meet with each and everyone of you!

Dear Tim and Julie, I am sorry to read about Sean's latest update but the good news is that you seem to have a good aggressive Oncologist. I will be praying for a better outcome.
I believe that Hospice is a great help as it will ease things up for all of you and Sean will be watched very carefully. Please let us know how Sean does on the Xeloda. Many good wishes going out your way!

23

(6 replies, posted in Introductions!)

Dear Christina, Welcome to the best place to be for CC support. So sorry to read about the diagnosis of your Mum and that you had to join our elite group. We know that when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that will be very useful in helping you to get through this first part of the journey.

Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please 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 Cholangio.

Do not be shy about getting 2 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor should mind you wanting more opinions.

Please keep us updated on Mum's progress and know that you are not alone in this new family.

Dear Bonnie, so sorry again to read about Gary. I don't know what I would have done without Hospice as they watched, guided, eased up the journey and actually gave us time to just be together. Teddy called it our "honeymoon". Most importantly is to keep discomfort at bay. I had them bring in a hospital bed and set it up in the living room where it was brighter and airier and they could have more room working around Teddy. It also made things more comfortable when visitors came over.  One more thing, the hospital bed makes it easier for a patient to get in and out of bed. Keep on taking each day at a time, remember to be kind to yourself and know that we are all here for you!

Hi, positivity. All I can tell you about is a refusal Teddy gave for chemo. But he was 78 and was told he had about 5 months left after fighting the good fight for 5 years. The ONC offered him palliative chemo and Teddy asked him how much time it would buy him and the ONC said, maybe a month. Then T asked him , "what would you tell me to do if I was your Father?". The ONC said, "I would not let him do it!". Decision made and I believe T made the right decision.