• From: San Francisco Bay Area
  • Registered: Mon, 07 Jun 2010
  • Posts: 63

Topic: Please read Medical Updates:Statistics/Rare Cancers.

I just read this. I'm going to have to read it again to get the full weight of it....

Please read the article so that we can "brain-storm".
Why can not we contact therm?  To say "Hey! We're over here---come get us!"
Could not the CC Foundation contact them , ORDR?
I wonder why they have not contacted "Us"/the Foundation------Do they not know of us?
Can we somehow send letters, emails, etc. to this ORDR?
Can we incorporate contacting them with CC Awareness Month?

Lainy, Slittle, Duke-------I know we can come up with something.............
I feel that since you have posted about how you have sent letters in the past, emailed all the TV shows , contacted local news stations in the past and none of them even bothered to reply ............that I won't hold my breath waiting for them to reply to my emails----perhaps after you have read the article in MEDICAL UPDATES under CHOLANGIOCARCINOMA at the top of the page.......maybe we can "Stand Up and be Noticed".

Snezzie's Website

  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Please read Medical Updates:Statistics/Rare Cancers.

Snezzie.....at this meeting, The Cholangiocarcinoma Foundation was represented by our president, Sara Hinkley.  As far as I know, this was a brainstorming session.  We should know more within the next few weeks.
Dr. Welch also is a member of the North American Task Force for Hepatobiliary Cancer. There are two advocates on this Task Force, and I am the one representing the Cholangiocarcinoma Foundation.  Therefore, our cancer is represented and hopefully, we will be included in the suggested international clinical trials. 
According to the last phone conference led by the NCI and on which I participated, a shift to international trials is contemplated. The reasons are obvious; we need a higher patient base and that can only be achieved by pooling together patients

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
  • Registered: Wed, 28 Jan 2009
  • Posts: 143

Re: Please read Medical Updates:Statistics/Rare Cancers.

snezzie,
   the only thing i can come up with is  that if you make enough noise some one will hear you.....how many members do we have...,family of some one fighting this, friends of some one fighting this? get every single one of us and them and i mean every one to write and e-mail the ellens, the orpahs, the oz, and just keep doing it until they realize that we wont go away until we are heard....we must do it all at once and just keep doing it , but all together...when you recieve one or two letters its easy to put them aside, but when they recieve 3,000 letters all on the same subject its not so easy to put it aside...and if we dont get a response the first time,do it again,and again....in plain english we must become a pain in their asses, excuse me please....if we put half the energy in this as we do as caregivers we cant lose....this is just my crazy idea, i am open to anything the members think will benefit our loved ones.......united we stand .....devided we fall.......ron and lucille

  • Registered: Thu, 09 Sep 2010
  • Posts: 539

Re: Please read Medical Updates:Statistics/Rare Cancers.

Snezzie- I have e-mailed all the major talk shows also. I have  such a story to tell. I keep thinking if the rare cancer doesn't interst them the having two liver transplants should get there attention. There is the organ donor,  the rare cancer and surving terminal cancer angles. You would think one of those would get someones attention. I am god's walking miracle so surely he will lead us somewhere to spread the word, I believed I was saved to give a name and hope to this disease. We will keep fighting- Cathy

  • From: San Francisco Bay Area
  • Registered: Mon, 07 Jun 2010
  • Posts: 63

Re: Please read Medical Updates:Statistics/Rare Cancers.

WOW !!!!
Marion--I simply cannot wait until January 20th !!!!
I think that you are marvelous.

Ron, Kathy ----I wholeheartedly agree with you both.  It just goes beyond belief that you, nor Lainy nor myself have ever received any replies. I can only assume that quite a few people have tried to do something---only to be disheartened by the lack of interest or empathy from others. ie talk shows/news stations,etc. and then give up.

Do you think it possible that once the holidays are over, we could seriously brain-storm  and make something happen for February,  CC. Awareness Month?
Ron, you are right--we've got to enlist a great number of people--motivate those who can and are able to help.
Kathy-- it's hard for me to believe that the media did not just grab your story---we've got to change that. Somehow. Some way.

Snezzie's Website

  • Registered: Sun, 01 Aug 2010
  • Posts: 493

Re: Please read Medical Updates:Statistics/Rare Cancers.

I go on Facebook to keep in contact with friends and on the sidebar, every day, they are asking for support for Paula Deen who has been diagnosed with diabetes. People are encouraged to support her by wearing diabetes bracelets. I posted on facebook that I love Paula Deen as much as the next person, but cholangiocarcinoma is a rare cancer and there is no money, research, or other attention given this cancer. Perhaps it will take a star getting it to draw attention to it. Sad, but that may be something that would promote the cause. Let's hope we can work together to get the word out. Any thoughts on writing to politicians? Susan

  • Registered: Thu, 09 Sep 2010
  • Posts: 539

Re: Please read Medical Updates:Statistics/Rare Cancers.

Good news-my local paper is going to tell my story for Christmas. I am going to interview tomorrow and will make sure "cholangiocarcinoma" is in print!! I also just read Barnes Hospital paper and they talked about new transplant floor and the need for it because they are one of the "few cholangiocarcinoma centers in the nation". Who knew we had a center! These are small steps but they will come up when googled. I will post link to paper later, don't want to tempt the gods. Cathy

  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Please read Medical Updates:Statistics/Rare Cancers.

Cathy.....that is so very exciting.  Please, make sure to send us the link for the paper.  You have so much to talk about; this will be a great story.
Best wishes,
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
  • Registered: Wed, 28 Jan 2009
  • Posts: 143

Re: Please read Medical Updates:Statistics/Rare Cancers.

i am sure that we can come up with something if we get enough people to join in......we are going to our daughers house for Christmas and for a short while there will be no talk or thinking about this monster.....just want to enjoy the time with family and friends......take care and be well and have a Merry Christmas.....ron and lucille