Dear Cassandra, I am so very sorry to read about your Mom and what she has been going through. Is her Oncologist aware of all these things. There are MEDs she can take for pain, nausea and depression. Have you tried to get a 2nd opinion. Last but far from least I have a list of the 10 signs the journey's end  is near. I found it to be very helpful and feel the more you know the less scary it is. I will send them to you if you email me through this site. Just click on my name and it will take you to my email. Also has the Oncologist suggested Hospice? They will start coming in months before the end and would be of great help to Mom and you.

2

(81 replies, posted in Introductions!)

Dear Dawn, is Dr. Javle a good thing?  It is the best thing!!! Doesn't get any better than him. He is also on our CC Board. You couldn't be in better hands. I am sue that April 18th cannot come soon enough. I am excited for you as well!

3

(112 replies, posted in Introductions!)

Tiah, I understand your frustration. Even at the end of Teddy's journey people thought he looked good. Must have been the Sicilian in him! I always say that the only thing we know for sure is that we don't know enough about this crazy monster. Can you get another opinion at this point just to see what another DOC would say or recommend? Hang in and hang on, we are all with you! I know you will keep us posted.

4

(112 replies, posted in Introductions!)

Dear Tia, I am so very sorry to read about Mum. I cannot help but know that I am thinking about you both and sending prayers and the best wishes your way.

WOW, Jill, what a great story!!! Congratulations to your BIL on his very successful surgery and you had a wonderful Surgeon as we know of his great reputation with CC> Now with Spring I am hoping every just keep springing forward for our newest miracle warrior. Please keep us updated on his progress and we truly care and posts like this one are very much needed.

6

(7 replies, posted in Members' Cafe)

Well thank you, Scott and it is good to see your smiling face! I hope you are doing well. Our Spring in Phoenix has already seen temps in the 90's.

7

(81 replies, posted in Introductions!)

Dear Dawn,  Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey. Knowledge is the most important tool to begin this 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.
I am so very happy you got in at MDA Houston and would the Dr. happen to be Dr. Javle?
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/ 
Please do keep us updated on your progress as we truly care.

Gail, all sounds good and know that you are doing all the right things. We love to hear that pain is going down. Ensure is good too. My Teddy liked the Carnation Vanilla Instant Breakfast  and I would blend in a banana. You can drink it in place of a meal or with a meal.  Keep that gret news coming. Slow but sure!!!!!

Absolutely fantabulous!!  Thank you for posting, Gavin and a huge thanks you to all who attended. I just feel good things around the corner are coming!

10

(14 replies, posted in Introductions!)

Gail, just some suggestions on what to ask help for:  Grocery Shopping, Laundry, Car Pooling for the kids. I know people who have taken offers for meals especially dinners and kept a calendar of who is doing what. Grass cutting?
Therapy is a great idea and you might want to ask your GP for something very light to help with the stress. I am a terrible pill taker but went on the lightest dose of Lexapro and it really helped. Also sometimes clergy can help.
I am so glad you found a great ONC!!!
You WILL get to where you need to be take be kind to  yourself!

11

(14 replies, posted in Introductions!)

Dearest Gail, welcome to our wonderful family and the best place to be for CC support.
We know that when you start this journey you feel as though you have been hit in the stomach with a bat! You have more on your shoulders than one person should carry and I am wondering if you can reach out to relatives and friends and work up some kind of schedule for others to help.
I am also hoping that your husband is with an ONC and Hospital that has experience with CC.
Don’t 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/
You are already doing the right thing by trying to take each day at a time. I know you are going to get some good responses here and please know that you are not alone as you have a whole new big family here to help.
It is cathartic to be able to write to us as pounding the keyboard can be very helpful!   Please keep us updated as we truly care!

12

(6 replies, posted in In Remembrance)

Dear Tim and  Julie, my heart goes out to you on the Passing of Sean. A valiant warrior at such a young age. A new angel for G-d who will be watching over you now as you did for him.

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!

13

(7 replies, posted in In Remembrance)

Dear JD, I am so sorry but like you I was wanting suffering of Teddy to be done as well. You and Bill
fought valiantly and with dignity and once again another amazing being has become an Angel of G-d.

Perhaps from Bill 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.

14

(66 replies, posted in Introductions!)

Dear Googily, I am truly sorry to read about Bill. I pray he is comfortable and that the end of the journey goes smoothly as well. Keep hold of his hand and telling him you love him as he will hear you. Sending prayers and giant hugs.

Dearest Catherine, What a beautiful tribute to your wonderful Dad and I might add what a beautiful couple your parents made. I thank your Dad for his Service to our Country in many ways. A Gentleman and a good warrior. Thanks for this post and the picture and I hope you are doing well.

16

(29 replies, posted in General Discussion)

Dear Kim, your go to ONCs at MDA Houston are at the top  of the CC field and I met one of Dr. Javle's Nurses (a man) at the CC Conference in Salt Lake in February. What a wonderful person. I feel you will be in much better hands then where you are.
My husband started out at 6.5 cm and it was brought down to 4 in a month of radiation. His CC was in another area and he was 73. Your husband has a younger age on his side. 
The very best of luck to you and the time is due to turn this all around for Rich.

17

(29 replies, posted in General Discussion)

Dear RichNKim , 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 remarkable family. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time.

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.

As a former Wisconsinite (Milwaukee) I am wondering where Rich is being treated?
I want you to know that many of our Members have been diagnosed at Stage IV and once the best treatment for them was received they started getting much better.  Most had sought out other opinions.
Please do keep us updated on hubby's  progress as we truly care.

P.S. Sorry for my delay in welcoming you but I was out of town for a week.

Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
You never know how strong you are until "strong" is the only choice you have!

Julie you already know how excited I am with your good post today. I want to tell everyone what a hero you are and when I feel low I just think of you and what you have been through and how much you are sounding like my new JuJu again!  What we need is for this "break" to last long enough for that new idea or new treatment to appear. choices are the best.
Your Grandsons are the most special little men I know and you are lucky to have a most wonderful husband. Keep up the good work and maybe we can meet in Milwaukee the end of July for Festa Italiana. everyone MAY THINK WE ARE FRUIT CAKES BUT LOVE FROM YOUR PROUD SISSIE!

Dear Caligirl,  Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your Dad 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. 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.
As to the possibility of a Whipple at 84, I think it would be up to the ONC. My husband had one at 73 and while it is not a life threatening surgery like heart surgery it is a huge surgery. Teddy would always ask the ONC or Surgeon what he would do if Teddy was his father.  Funny I guess but he always got the right answer.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/

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

20

(3 replies, posted in General Discussion)

Positivity, yes, it is kind of a rule of thumb as plastic stents have a tendency to get logged or infected. My husband had plastic stents and his were changed  every 6 weeks to 3 months. Also it was the Oncologist who ordered it not a GI.

21

(4 replies, posted in Members' Cafe)

Hello, Julie!!!! SO great to see your smiling face. Hope you are doing extremely well and sue do miss your sweet self! Thanks for stopping by and I am sending you the biggest hugs ever!

Dear Joe, the best I can give you is to get another opinion. Gather Mom's LABS and test results and just see what someone else would have to say.  I would think the ONC should know about the low platelets and give you some advice. You might also go to our search  engine and type in low platelets and read the posts that pop up as I know there are quite a few. Again hoping for the best for you and your Mom.

Hysterical and I would add very "cheeky".

Dear Basia, Welcome to the best place to be for CC support. Truly sorry to read about your diagnosis of CC 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. 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.

My husband had a Whipple 10 years ago and I know it is easy for me to say but PLEASE  do not be scared. Yes, it is a BIG surgery but know that it is not life threatening like heart surgery is. He was sitting up the 2nd day and walking on the 3rd day. It will be a slow recovery but each day you will see more light at the end of the tunnel. If you have any questions I will try my best to answer them. Surgery us our favorite word as it is the best RX for a cure.
Oddly enough the biggest change was his loss of appetite for sweets. And that actually was a good thing.
Sending you the very best wishes and on March 2nd I will cross everything thing I own, even my eyes for a successful Whipple. You are right that cupid sure missed the mark when he shot the arrow on Valentine's Day for you! But you are getting the best resolution!

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

Dear Kelly, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your CC  but you have come to the best place for CC support. Not to mention our remarkable family. 

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.

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 let your ONC know about absorption/digestion and weight loss and anything else going on as there are MEDS to take care of all those situations. You might try some nutrition shakes as they can even be taken in place of a meal or taken with a meal. My husbands favorite was Carnation Instant Breakfast, Vanilla and I would blend in a banana.

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

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