Topic: Cholangiocarcinoma

My name is Angela. My Aunt was diagnosed this week with Cholangiocarcinoma, it is unoperable becuase it has already spread to teo lobes of her liver. and its very extensive. Any information would help. I have been reading alot online. One thing I have been trying to come accross with no luck is what color ribbon for Cholangiocarcinoma. I want to buy bracelets for the while family, but dont know what color to get.
Angela Lempka

"Love is like the wind, you can't see it but you can feel it"

Re: Cholangiocarcinoma

It's my understanding that we have 2 colors, green and brown.

Patty

Re: Cholangiocarcinoma

So where do you think we can buy the wristbands or ribbons for it?

"Love is like the wind, you can't see it but you can feel it"

Re: Cholangiocarcinoma

Sorry to hear about your Aunt, Angela. We have no bracelets yet but we went out and bought the Live Strong yellow Lance Armstrong bracelets. Those were the ones that started the whole bracelet thing and they do stand for Cancer. You can find them on line under Lance Armstrong.

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: Cholangiocarcinoma

Hi Angela....we have Cholangiocarcinoma.org Foundation bracelets.  I have quite a few left over from the GI conference attendances.  (Sorry, Lainy for not mentioning it, earlier.)   If you give me your address I will gladly mail some to.
So sorry to hear about your Aunt.  Please, keep in mind to search out different opinions in re: to the treatment  (if that is what she choses to do.)  You may talk to three different specialist and each of them may disagree with the other therefore, you need to seek out several opinions by gathering all medical information (including lab tests) pertaining to your Aunt's diagnoses and forwarding it to those physicians working with high volumes of Choloangiocarcinoma/bile duct patients.
Sending tons of good wishes your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

I was hoping to get like 30 oor 40 of them do you have that many? I am willing to pay for them or make a donation.

"Love is like the wind, you can't see it but you can feel it"

Re: Cholangiocarcinoma

We are awaiting the new bracelets to arrive, real soon.  Angela, let me get back to you on this within the next few days.  Is that alright?
Thanks
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

Yes.. Thanks so much.

Angela

"Love is like the wind, you can't see it but you can feel it"

Re: Cholangiocarcinoma

Hi Angela.
I bought my bracelets from an oranization called Choose Hope. They can be found at choosehope.com. If you buy 100 or more they only charge $1.00 US. Less then that they are $2.00.  The saying on their bracelets is SAY IT - FIGHT IT - CURE IT. They also have many other items.

Green is the color for liver on the website. It was the closet color for me since they removed 70% of my liver, the common bile trunk and gallbladder.

Some websites will say yellow is for liver but yellow is the most common color for many organizations and not ones dealing with cancer. I wanted a unique color so when people ask what does that bracelet represent, it starts a conversation.

Hope this helps. I don't support/advertise for any single organization. This is just where I found the items I was looking for.

10 (edited by marions Wed, 31 Dec 2008 17:30:58)

Re: Cholangiocarcinoma

The Cholangiocarcinoma Foundation has bracelets specifically designed for our cancer.   The newer version should be available real soon however, I do have some left for those who do not want to wait although, I believe for the new ones to be nicer. 
I wear mine, always.  It connects me to all, touched by this cancer, and it gives me hope that one day this disease will be eliminated.  Then this board will become one of joy, only.  In the meantime, it brings about awareness of a cancer to which very little resources are dedicated.  I believe for this bracelet to be one more step in achieving our goal of early detection, recognized treatment protocols, and research money allocated due to collaboration of medical institutions, physicians and world-wide research. 
Hugs to all,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

Marion,
I can't wait until your new bracelets come out. I didn't know about your site when I ordered my bracelets from Choose Hope. I am amazed by the number of people who have or have been touched by Cholangiocarcinoma.

Re: Cholangiocarcinoma

Oh David....I don't mean to say that only our bracelets should be worn.  It is a very personal expression, and wearing a bracelet of your choice does not demean the value of the Cholangiocarcionoma bracelets.  I am happy for you to have found something to your liking.  I am sure for Stacie to be announcing the arrival of the new bracelets.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

Marion,

I received the bracelets today. They are absolutly amazing!! Thank you so much. I believe my Aunt and family truly appreciates them. So thank you again!!

Also, I emailed a few people maybe a month ago to see if there is anyway that I could help out the foundation.... as you know I live in New York, so fundraisers, writing for newsletters, whatever you or the foundation needs, I am here.

Thank You again!!

Angela

"Love is like the wind, you can't see it but you can feel it"

Re: Cholangiocarcinoma

Angela....so glad that the US Office is reliable.  You are so very welcome, and I am happy to know to have made your Aunt and family happy. 
I will make sure for your offer to be helping out with the Foundation to get to the right place.  Thanks for being so kind.  Please, feel free to contact my per personal e-mail address should you not receive a response within the next 2 weeks.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

Marion,
I would rather have had the Cholangiocarcinoma bracelets. That would have meant more to me, my family and friends. I just didn't know about your wonder website at the time. Please get the word out when your new bracelets come in. Thanks for everything you do for us!

Re: Cholangiocarcinoma

David...I have some of the older bracelets left.  If you send me an e-mail with your address I will mail some to you, also.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

I, also, would love to have a couple bracelets. Old or new, it doesn't matter. I currently wear the Livestrong bracelet, but it would be so much more meaningful to have the one that hits closer to home. 

I will email you thru the website. Please let me know if I can pay for shipping, or for the bracelets.

Thanks,
Sue

Today is a new day. Congratulations, you are already a survivor!

Re: Cholangiocarcinoma

Where can you find the new bracelets. I definitely want some. I lost my mom almost six years ago after a hard fought 6 month battle. I'd love to honor her memory by wearing one.

Thanks, Carla

Re: Cholangiocarcinoma

Carla..I am so sorry to hear about your Mom and gladly I will send a few bracelets to you.  We had handed them out at the medical conferences attended throughout the year and I am down to just a few.  Rick is in the process of re-designing a new batch and as soon as they have arrived Stacie, most likely will announce it. 
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

I went to the store on this site and did not see the bracelets.  My dad was dianosed 8/07 and just today we have had Hospice come in.  The klatskin tumors have shown there ugly selves in both his lungs and he is fading fast.  I would love to have a symbol to share my daddy's story of his courageous fight for life.  Please let me know how I can get a bracelet.
Thanks, Patsy

Re: Cholangiocarcinoma

Patsy.......So sorry for you having to join this site but, I am extending a warm welcome to you.  Of course, Patsy, I will send a few bracelets to you ASAP.  Please, e-mail me by clicking on my name on left side, in box, and give me your address.
As you may already know this cancer loves to go to the lung.  You might want to read up on previous postings discussing this by using the search function.  Here you may find some helpful hints, tips, and suggestions beneficial to your Dad.  Don't give up hope.  This cancer has surprised many of us by being unpredictable in it's progression.  Wishing the absolute best for your Dad.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

wow.. I'll bet we'd all like to purchase  the bracelets for ourselves and our families and friends.  Maybe we can brainstorm an idea or two about selling them ourselves to raise money for the organization. (just like the kids sell candy at school to raise $)  Please let us know when they become available.   thanks, Deb big_smile

Re: Cholangiocarcinoma

Thank you so much Marion for the kind words - I still have not "introduced myself"  I have tried many times but the tears fill my eyes so that I can't see the screen.  I do read and research as much as I can, when there is time.  I feel like I am caught up in a tornado that has me twirling in every direction.  Just when I think the winds have calmed, another gust comes.   My dad fell yesterday due to his BP being so low - it is so sad to see him go down hill so quickly - just within 2 months this monster has took his quality of life completely.  I will soon post an intro - I know that by talking about it I am helping others and myself.

I have e-mailed you my address - thank you and God Bless everyone who visits this site.  It is a comfort to know there are others who are also dealing with this vicious, deadly cancer.

Re: Cholangiocarcinoma

Patsy....it is amazing the strenghts we demonstarate when needed.  You are such an example for that.  Hang in there.  And, don't put any more on yourself with worrying about introducing yourself.  You already have done so.
HUGS
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma

hi marions...im new to this site also...i came across it thru google smile i was wondering about a bracelet or ribbon or anything that has the colors for bile duct cancer (or that big C word that i cant spell or pronounce lol)...my grandma just got told today that she has 1-2 months to live and i wanna show support in any way that i can