Topic: The Cholangiocarcinoma Newsblast

Most likely you will read this via numerous sources, but I thought to post it here as well:

Dear Patients, Family, Friends, Volunteers, Advocates and Supporters:

We need your immediate help to spread the word about important cholangiocarcinoma (bile duct cancer) research!



The Mayo Clinic, MD Anderson, Sloan Kettering, MGH, UCSF and The Cholangiocarcinoma Foundation are collaborating to sponsor vital research initiatives for all cholangiocarcinoma (bile duct cancer) patients to identify cancer causing genes. 



In addition, a team of researchers from these institutions have collaborated to design a new study called Cholangiocarcinoma In The Young (CITY).  The CITY initiative will allow researchers to study patients diagnosed with cholangiocarcinoma who are under 50 OR have additional family members affected by this cancer or other cancers.  CITY was launched in response to the recent death of Christopher Wilke, (age 12) who was the first patient on record at Children’s Hospital Los Angeles — and among the youngest patients ever — to be diagnosed with cholangiocarcinoma.



Take Action

EVERY patient diagnosed with cholangiocarcinoma is critical to these studies.  If you have cholangiocarcinoma or know someone who does, you can assist researchers NOW!



Learn more now

Register now

Follow Team Christopher


Stay Connected

Please connect with and engage your friends and communities through social media.   Start a discussion and help us with these important research initiatives for ALL patients diagnosed with cholangiocarcinoma. Follow the Cholangiocarcinoma Foundation on http://www.cholangiocarcinoma.org/image … -16x16.png  http://www.cholangiocarcinoma.org/image … -16x16.png  http://www.cholangiocarcinoma.org/image … _16x16.png 

Thank you for your tremendous support!

The Cholangiocarcinoma Foundation

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: The Cholangiocarcinoma Newsblast

Thanks for this Marion! So looking forward to reading and hearing more about how everything goes. The links that you posted don't seem to work though for some reason. Are these what you were trying to post?

http://www.linkedin.com/company/the-cho … foundation

https://twitter.com/curecc

https://www.facebook.com/cholangiocarcinoma

Apologies if I'm stepping on toes here!

Hugs to all,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: The Cholangiocarcinoma Newsblast

Gavin...you stepping on toes?  Never!  Facebook is fine for the moment.
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: The Cholangiocarcinoma Newsblast

Thanks Marion!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: The Cholangiocarcinoma Newsblast

http://cholangiocarcinoma.org/wp/?p=452

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: The Cholangiocarcinoma Newsblast

I sent in my initial form earlier today and already had an email from the folks at the Mayo Clinic with the consent forms.  I'm very excited about participating. 

I have also forwarded the info to two friends who both lost parents to this dreadful disease and I hope that they will chose to submit records as well.  I think it's important.  And, I still shake my head that such a rare cancer can strike one of my best college friend's mother and a very close current work colleague's father, as well as me.  I didn't know that either one had CC - just that they lost their parents to cancer.  It was only when I told them my diagnosis that I learned of theirs.  I think it's time to talk about this in public a lot more. 

I was delighted to have several friends email/text/call me about Melinda's wonderful story about her NIH trial today.  They were all over the country and reading different papers, but they all saw "bile duct cancer" and immediately thought of me.

Impatient patient.

Re: The Cholangiocarcinoma Newsblast

That's great Lisa, thanks for sharing that with us all!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: The Cholangiocarcinoma Newsblast

I filled out the initial form today.  Unfortunately (for a lot of reasons) I am not under 50, but the Mayo does have my tissue sample and blood work on record there.

I will pass along the information.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: The Cholangiocarcinoma Newsblast

Ha,ha, Randi, count me in on the not under 50 group.  Thanks for filling out the information.
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: The Cholangiocarcinoma Newsblast

Yeah, I'm not in the under 50 group either. But just barely. :-)

Impatient patient.

Re: The Cholangiocarcinoma Newsblast

Lisa.....I am beyond "barely."  Can't figure out how that happened.
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