Thank you, Sissie JUJU. I will be thinking of yOU!

Thank you, Gav and Deb. Really getting excited as we are going on  New England Cruise with 3 days pre Cruise in Montreal. Mel got me a tiny French Dictionary! OY!


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Dear Janet, welcome to our remarkable family but so sorry you had to find us. You will find the most loving and caring people in the world, right here.
I too live in the Phoenix area, in Gilbert. My husband had the CC and went to a fabulous Doctor here who has retired but the rest of the office is at Chandler Hospital also know as the Ironwood Group. I know they are familiar with CC. Other opinions are very important as different Doctors see things differently.
Being itchy can mean the bile ducts are clogged. Do you have stents in the bile ducts? What is Mayo doing for you for treatment? You really need an ONC who has experience with CC. I had gone to MDA and it is actually a Banner Hospital and when I went there I was told by the ONC I saw (for something else) that he had treated only a couple of CC patients.
What part of Phoenix do you live in? Perhaps we could  meet and talk if you like. I will be going out of town tomorrow and will be back September 4th. It is always a wonderful thing to meet other CC Caregivers and patients as you then realize you are not alone. Below is a site you may find helpful:

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

Just a note to let you know I will be leaving tomorrow for a vacation and will return on September 4th. Hang in and hang on and I will be wishing and praying for some good reports when I get back to my home here!

Dear Cookie, just a note to say I am always thinking of you and as we all know stable is a very good word.  Have you tried any of the nutrient drinks like Boost or etc? Always thinking about you and of course wishing for the next scan to show more shrinkage!

6

(6 replies, posted in In Remembrance)

Dear Sharon, I am so very sorry to read about Phil. Wish I did not have to say, "welcome to our new normal". I am so happy that you have decided to stay aboard to help others. I came aboard because I felt the need to pay it forward for our Board who got me through this journey and it makes me feel so good and I also know Teddy would want me to do this. I promise you that one day all the tears and memories will only turn into happy tears and memories. I a, sue Phil is very proud of you and I know you will feel his loves always around you.

7

(4 replies, posted in Announcements)

Hi our Computer Hero! Working for me....thanks!

8

(5 replies, posted in Introductions!)

Dear Julie, great post and powerful words from a patient's point of view of the Caregiver. Almost every time Teddy asked for something he would apologize for putting ME through so much, even if it was just a scrambled egg! Sometimes I thought that was worse to hear than nothing. I would do it all again without his apologies if it would bring him back. Being a Caregiver is not easy, I think, mentally.  And that is why we handled it with humor. Honestly, the humor really helped us both. Probably could have written a TV Sit Com from things we said and did.
You know, Sister Julie, I will be cheering for your Ablation like never before. I know you wanted this and girl, you fought like crazy and got it! Best of luck and I will be thinking of you!

9

(5 replies, posted in General Discussion)

Dear Stephanie, through it all we try to stay realistically optimistic. We have seen some Miracles on this Board even for Stage 4. The best you can do IS to make the most of each day which we all should be doing anyway.  When you say you feel like the Mom, I can relate to that. I am 76 now and my daughter is 54. About 2 years ago I asked her if she noticed a change in our relationship, that being I am now the kids and she is the mother. I do not make any decisions without her input and I am truly grateful for her as your Mom is with you. I better watch my step or she will put me in time out!!! You never know how strong you are until "strong" is the only choice you have!

OMG! and YIKES! What next.

Oh, Scott, that is good news indeed!!!! YEA!

Sorry about the Gall Bladder, that can be a painful one. So glad everything is looking good now.


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12

(5 replies, posted in General Discussion)

Dear Stephanie Marie, welcome to our remarkable family but sorry you had to find us. I am so sorry about your Mom's diagnosis and we are a curious bunch here so could you tell us a little more? What was her  Diagnosis  and where is she being treated.
Yes, it certainly is an upside down disease and in the beginning one feels as though they have been hit in the stomach with a baseball bat. Has a treatment been started? Below is a site you may find helpful and please keep us up to date about mom's progress.

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


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Dear Brian & Barb, Welcome to our remarkable family but hope you may not need us. In case you do need us this is the best place to be for CC.  You are doing all the right things but know that sometimes it is a difficult diagnosis to confirm. We have had quite a few members at Moffitt and getting other opinions is so important, like I said all the right things.
Where does all this sit right now, like what are they suggesting? The only suggestion at this point in time would be to see Dr. Javle at MD Anderson in Houston. He is one of the tops in the CC field.
The not knowing and the waiting is quite burdensome. Please keep us updated on Barb. Below is a site you may find helpful just in case......

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

14

(9 replies, posted in In Remembrance)

Dearest Rangani, I am so very sorry to read about your dear Mum. Please accept my humble condolences.

Death is nothing at all. It does not count.
I have only slipped away into the next room. Nothing has happened.
Everything remains exactly as it was. I am I, and you are you,
and the old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, we are still.
Call me by the old familiar name. Speak of me in the easy way which you always used.
Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without an effort, without the ghost of a shadow upon it.
Life means all that it ever meant. It is the same as it ever was.
Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval, somewhere very near, just round the corner.

15

(4 replies, posted in General Discussion)

Dear Shellie, I have been on this Board from day 1 and have heard that statement before.  That infection takes more lives than the CC itself  and some one please correct this old timer if I am wrong. I take correction well.
The only thing I can suggest is more opinions. Something does not sound right to me. Everyone please help here as we really need some input quickly! Shellie sending you hugs and all the best. BTW when one is getting "strange" answers from any DOC I tend to listen to my gut. It always steers me right!

Dear Rose and Colleen! OMG! Every time I read about the wonders of Keytruda I am so overjoyed I feel as though my heart is going to explode with happiness. Way to go Rose and at 76 years old I cannot help but imagine doing my cartwheels!!!  What a team you gals are and just enjoy, enjoy!

Dar Nancy, welcome to our remarkable, smart and loving family but sorry you had to find us.  We STILL are the best place to be for CC.
I cannot be of help with trial but wanted to say YES, CC is very high in Asia. Some of that we know is from a parasite called liver flukes found in a fish (can't remember the name)  but if you Google liver flukes it will give the name of the fish.  My husband got CC at 73 and I just know it was that parasite from when he served in Korea. It adheres to the bile ducts for 30 - 45 years and when it leaves it leaves behind CC. It cannot be detected during those years until after it leaves and it is truly a monster far beyond the size of the parasite! The big problem is that the fish is considered a delicacy and is not properly cooked.
I am wishing and hoping for some good luck with Mom and please keep us posted on her progress as we are a great nosey bunch. Nosey is welcome here!

Oh, thanks for that, Marion. I used to do that and it totally left my mind. See what happens at my age???? The cards are lovely and easy!

19

(16 replies, posted in General Discussion)

Megan, you can "anger" here anytime you feel the need. No apologies needed. You are much better than I am as when I am waiting for answers I want them YESTERDAY! Hang in one more day and don't forget to take your list of questions. Is there anyone that can go with you for this appointment as 4 ears are better than 2. I think once you get some kind of treatment started the outcome seems to be that the fright turns to fight because something is being done. And you are so right, it seems to take so very long. Please let us know what happens at the big meet up!

20

(16 replies, posted in General Discussion)

Megan, when feeling as you do I would suggest a meeting with the ONC where you present him with a list of questions that you need answers too that are understandable. My other suggestion is to gather your Mom's reports from Scans and LABS and get a 2nd opinion. We are big believers in 2nd opinions. You are in a city that has the best place to be for CC patients and that is MD Anderson. Best of luck.

Dear Rangani, I am so sorry to read about your Mum. I have a list of 10 Signs the End is Near and would be happy to email them to you if you send me your email address. It is really helpful and my husband followed it pretty closely. Hoping for a peaceful journey for your dear Mum.

22

(16 replies, posted in General Discussion)

Dear Megan, I am so very sorry about this turn in your Mom's journey. Not sure this is Stage 4 but your ONC should be able to tell you what the Stage is. All these terms we learn, right? Wishing for the best for Mom and be strong and please keep letting us know how everything goes.


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23

(8 replies, posted in Introductions!)

Hello and welcome to our remarkable family but sorry you had to find us. WOW!! It sounds like your Father has had an enormous turn around, excellent! And you sound like a fabulous daughter but then I am sure he already knows that. Below is a site you may find helpful and please keep us updated on his progress.

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

24

(36 replies, posted in Introductions!)

Dear Googily, I am doing somersaults because your news is so good! It can turn on a dime but enjoy the million bucks you just got! We get happy over the craziest stuff. Hope to hear even more good news in the near future. We are selfish, we want MORE!

25

(6 replies, posted in In Remembrance)

Dear Daisy, Your Mum is at Peace now and whole again and one day you will meet again because To die is to take the last step in the road to Eternal Life. You were an awesome caregiver and while your heart is heavy at this time please know that down the road, when you are ready, all GOOD memories will replace the sad journey you have both been on.  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!