Topic: define cholangiocarcinoma

When people would ask what type of cancer my Mom had and I told them, pretty much everyone said, "I never heard of such a thing." So I think we should come up with some "alternative" definitions of cc, here's mine:

cholangiocarcinoma: a cowardly disease that lurks in the body, frequently camouflages itself as "stomach problems," and does not hesitate to pull sucker punches.

Re: define cholangiocarcinoma

Cholangiocarcinoma:  a relentless disease, that sets in motion the most emotional and physical rollercoaster ride of a person's life, and invites your loved one's along for the scary ride as well.

Take it to the Limit,One More Time! (Eagles)

Re: define cholangiocarcinoma

Cholangiocarcinoma:  A living nightmare. So rare that all the spelling corrections on the internet think we keep misspelling it!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: define cholangiocarcinoma

cholangiocarcinoma-a terrible disease that brings wonderful people together

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: define cholangiocarcinoma

Cholangiocarcinoma-A rare & devistating disease that sneaks up quietly before striking & blowing your world apart changing it forever.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: define cholangiocarcinoma

A word so rare that the not-so-nice clerk at the D.M.V. was left speechless when given CHOLANGIOCARCINOMA as the reason for our handicapped sticker.

Re: define cholangiocarcinoma

A word so rare that the deputy chief executive of the hospital
turned it into CHORIO CARCINOMA. (CANCER OF THE PLACENTA)

HE was a mountaineer and motorbike rider.

U.K.Member

8 (edited by JeffG Mon, 22 Sep 2008 06:57:03)

Re: define cholangiocarcinoma

Good Morning America and the rest of the world best of the day to you all!  It's so nice out, I might go play ball.

Then again, I think I'll take it easy
and just walk around the mall!

Then again I might spend some money
and guess who would not like that?  Yes my Honey!

Then again,  If I want to spend money at the mall
I'm a big boy, so let the chips fall

Then again, if I spend to much she might ball
So, I guess I'll go out and do as I thought, and play ball instead of a walk in the mall.

Heck, I'll do all and pass the tissues, when she balls.
Hee! Hee! Ha! Ha! I'm as crazy as them all!

Proud Of It!  Man I haven't drank coffee in over a year , I think I'll have another, then I won't worry at all!

Have a nice day!

Jeff

Take it to the Limit,One More Time! (Eagles)

Re: define cholangiocarcinoma

Jeff, you are the craziest of them all!
My husband is rather small,
But he walks so very tall.
If he could, he would meet you at the Mall,
He loves to shop in every stall.
I hate to shop and thats the truth,
If your playing ball hit like Babe Ruth!!!!!!!!!!!!!!!!!!!!!
Teddy was a short stop, no pun,
He could really hit and run.
Was on the Farm Team for the Giants,
Then got called to war for our alliance.
After Korea in Europe he did play,
9 months later home, with no delay.
So, go on out and have your fun
Play in the mud or just pretend to run.
We love you to pieces, and that you know,
Always ready for Jeff's next show!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: define cholangiocarcinoma

Ok...here goes.  I'm not as creative as the rest, however. 

My brother's reaction to hearing dad's diagnosis of cholangiocarcinoma: "What the hell is a bile-duct?  Do we need it?"

cholangiocarcinoma, CHOLANGIOcarcinoma, CHOLANGIOCARCINOMA!
the rhythm of the word when trying to explain to the healthcare workers, doctors, EMTs, insurance companies, department of defense, family members
who can't quite grasp the word...but, then again, who can?

My suggestion for Jeff....
by all means, do it all:  go play ball, walk the mall,
stop at a casino and let the chips fall.
cholangiocarcinoma is a crap-shoot, after all.

(ok...I've not had my coffee yet, but I smell it brewing).

Lainy:  I'm excited to hear about Teddy's ball playing days.  My dad was scouted by the P. Pirates but he, too, went to Korea.  He did play on the military leagues in Europe and stateside.  I've been to most of dad's games both here and overseas.  The time frame and the story seems so similar, wouldn't it be a small world if my dad and your Teddy played together at some time? 
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: define cholangiocarcinoma

OMG this is too weird Jolene!  Teddy is 76, was in the 82nd Airborne, I believe he was to come home about 1952 and instead they asked him to play ball in Europe for 9 months! (This is second marriage so not quite sure of dates)
But think about this! If they were both in Korea and both got CC perhaps they contracted that liver flukes parasite!!!!!!! His name is actually Salvatore Sardina
and in the war they called him Sardi.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: define cholangiocarcinoma

I know these word poem things have names, but I can't think of it.  This is really a downer, sorry I'm in a funky mood.  Next time, maybe I'll try to do one with positive words.

C - Cancer
H - Hell
O - Oppressive
L - Loathsome
A - Anxious
N - Nervous
G - Greedy
I - Impossible
O - Obnoxious
C - Chemo
A - Awful
R - Recurrent
C - Crapshoot
I - Insidious
N - Nightmare
O - Ominous
M - Mind boggling
A - Afraid

Carol (Please don't kick me out for being so negative.  It's just one of those days)  Best wishes to everybody.

Re: define cholangiocarcinoma

Carol, I think that was ingenious! What ever works!!!  At least they don't have a Z!  This is a battle .......  we are the team!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: define cholangiocarcinoma

Lainy,
My first instinct when I read your husband's name was to call my dad and ask him if he knew of your husband.  Can you believe it??!! 
I'm curious about the liver flukes and Asian connection.  Especially since my brother (early 40's) was stationed (Navy) throughout that area.  As a matter of fact, his first assignment was the same as Dad's in Korea.  My bro has also been to Thailand, VietNam, Laos, etc in the last 20 years.  Makes me nervous now.  I mentioned this to him, and 'we' are going to do a little more research.  I want him to get checked, but don't know where/what to ask for yet.  With Dad, it was so far along that we concentrated more on keeping him alive, rather than how it started in the first place, tho we were curious.  When we asked, the docs didn't have any answer.
Sending you love,
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: define cholangiocarcinoma

Jolene,

My husband Jim was in Viet Nam in 1965-1966.  My understanding about the liver flukes is that there are parasites in the water in the Asian countries that get into the bile ducts if you swam in the water, drank the water or even ate food that had been washed in the water. They then silently chew on the insides of the bile ducts creating abnormal cells.  These cells can then develop into CC usually not until 30-40 years later. This is why many of the men who have it are in their 60's & 70's. They are usually otherwise healthy with no symptoms. By the time symptoms present it is usually so far advance that most treatments are not possible. My husband was fine until the middle of July & he passed away on 9-2-08 at the age of 62 only 1 week after it was definitively diagnoised. By this time he had lost so much weight & was so weak that he wasn't able to eat or drink.  I will always wonder if this information had been out there & he had been periodically checked for this through the years, things may have been different. My understanding is that the VA for the most part is saying there is no real proof of this, but I have found one or two cases where they have admitted to it being service related.  My husband had so many tests that showed nothing, however, it was after a liver biopsy & PET Scan that it was finally found. I do plan to do some more checking on this. Sadly, for Jim & I it is too late, but maybe knowing more about all of this can help others in the future. I hope this information is helpful to you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: define cholangiocarcinoma

Darla and all,

My brother was dx with CC in 3/08.    He served in Vietnam in 1965-1966 and his job was "testing the water".    He got sick and was sent to a hospital in the Philippines.    Transferred to Letterman Hospital in CA where he stayed for 8 months.   There was never a diagnosis made.    Now, years later,  he has cholangiocarcinoma and is on Hospice.     4 - 5 weeks left is what they think.     His wife, Joyce, is investigating with  local VA Office about a possible connection between his CC and Vietnam.      She has heard that many veterans from Vietnam got CC later in life.   IF the VA knew this and did not warn our vets that is just unthinkable to me.

Re: define cholangiocarcinoma

Carolyn,

Thank you for your post.

Yes, you are right. It is unthinkable, but does appear to be true.  Tell Joyce to keep pushing it with the VA as that is what I am going to do.  I only know of 2 or 3 cases were the goverment has admitted it was service related. They are usually saying that there is not even evidence or statistics to prove beyond a doubt that it is. If more of us keep on trying & more Vets are diagnoised or dying of this horrible disease, they will have to listen to us & agree!!!! It may be too late for our loved ones, however, maybe we can make a difference for those in the future. I think my husband Jim would want me to do this, in his memory, as would many others who have died because they were not informed early on of the possiblity & given a fair chance to fight it. I was told that this cancer is rare in the US but is very prevelent in Asian countries. It looks as if with all the Vets that are now being diagnosed it will not be that rare here in the future! We need to get this information out & keep fighting for all of our Vets & their families who have been affected, or will be in the future, by this devastating cancer.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: define cholangiocarcinoma

Hi Darla,
 
I spoke with Joyce today and she has already contacted the VA locally and  has called Buffalo,  NY,   and spoke with a person in the VA office there.
She is determined  to follow thru with this and was even encouraged to do so by the VA office.    She believes in her heart that Vietnam was where her husband (my brother)  contacted this CC thru the water.   She  will definitely continue with this investigation until some answers are given.
I will give her this Website as I told her that you were also investigating this possibility.      She will be posting soon.       Peace,   Carolyn

Re: define cholangiocarcinoma

Darla,
   Carolyn is my sister-in-law. I read the posts, and that is correct - I am going forward with this. The VA office here is sympathetic to my cause, and is willing to help me. It is SO important that we pursue this, because - as I explained to the woman in the office here - since they have known about this for a few years, they could have made public service announcements and prevented deaths of at least some of these veterans. It is hideous that they have done nothing. In fact, they SILL can make public service announcements, and save lives - if not the lives of our husbands, then veterans over the next few years.

Joyce C

Re: define cholangiocarcinoma

Hi Joyce,

I too am going forward with this. The man I was working with at the VA office here has recently retired & the new women taking over is starting mid October. I will then pursue this with her.  I think if others follow our lead we can do some good. If not for ourselves, we can hopefully make a difference for others. Please keep me updated as to how you are doing & I will do the same.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.