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Viewing 15 posts - 16 through 30 (of 185 total)
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  • in reply to: Clinical Trial Education Series: Clinical Trials 101 #35351
    sara
    Member

    Gavin,

    Yes – the webinar is going to be posted as soon as possible. Rick mentioned that he’d try to have it up by Monday, but we’ll post an announcement once it is up so you know to look for it.

    All,

    Something that I didn’t realize until this morning is that you do not have to dial in on a phone line to listen to the webinar live. If your computer has speakers, you should have been able to listen live via the internet. Hopefully this information will be helpful for future webinars.

    Dr. Welch and Elizabeth Neilson from the NCI are absolute angels. Elizabeth located Dr. Welch to present, and worked with us to help get the webinar off the ground. Dr. Welch went above and beyond with pulling together the appropriate information, and tailoring it so that it included bile duct cancer content in the presentation. They are both so giving of their time.

    in reply to: Clinical Trial Education Series: Clinical Trials 101 #35345
    sara
    Member

    Just a reminder that we will host a webinar featuring Clinical Trial basics on February 19, 2010 at 11:00 a.m. Eastern (New York). You can register for the webinar here: https://www1.gotomeeting.com/register/470676481. We are very fortunate to have Dr. Jack Welch from the NCI to be our guest speaker at this event.

    I have looked at the presentation, and it provides some really good information. There will be the opportunity to ask questions about clinical trials at the end of the webinar.

    in reply to: Hey…whats our ribbon color? #35425
    sara
    Member

    *snort* You gals are great!

    in reply to: In honor of Cholangiocarcinoma month #35421
    sara
    Member

    I really need to get back on FB. Thanks for doing that, Kris!

    in reply to: Hey…whats our ribbon color? #35422
    sara
    Member

    Our colors are green and brown. (of course, I’m sure Rick will come in here and give you some geek code for the exact shades of green and brown! :) )

    If you want to go with one color, I’d go with green since that is our predominant color.

    in reply to: Plan set #35370
    sara
    Member

    Kris – lots and lots of good thoughts and prayers heading your direction. Your age and tenacity are greatly in your favor, and I have faith that clarity will appear and you will know how to make the next step.

    I hope you and Hans had some relaxing time by the pool.

    in reply to: Cholangiocarcinoma Awareness Month #31998
    sara
    Member
    Lainy wrote:
    Hi there Joyce. The letters went to Oprah twice, Ellen DeGeneres, CNN, Geraldo, Riley and Beck. Oh, also the Walter Payton Foundation and Helen Hunt. I also had an idea of getting in to the World Book of Records by having a day where volunteers all around our CC Globe would shave their heads on a certain day in support of CC. I know, I can get carried away. Or a “Remembrance Day” around the world picking a month to use as an awareness month. Remember I was people what month they liked. Just trying to get the ball rolling but I know sometimes these things can be daunting especially if one is not feeling well. Then my own problems started in as well and I let my brain rest on that part of it.

    LOL, Lainy! Shaving our heads? Hmmm…Maybe I would do it and send it Kris’ direction. Although, I doubt she’d want my hair. It’s rather damaged right now.

    If anyone has any suggestions on what to do this month, please let us know. We’re doing a soft launch this year just based on the timing aspect. However, we can make some things happen fairly quickly, so please let us know if you have any thoughts on what we could do to help raise awareness.

    in reply to: Cholangiocarcinoma Awareness Month #31997
    sara
    Member
    Cherbourg wrote:
    I invite everyone (and especially Kris) to North Carolina for BBQ. Lexington, NC is the barbeque capital of the world…lol

    Pam

    Those are fightin’ words, Pam! :) Actually, I love the pulled pork in North Carolina. If you are ever in Texas, please let me know. I’d love to have you over for some smoked brisket!

    in reply to: Cholangiocarcinoma Awareness Month #31988
    sara
    Member

    Rick has added a fun graphic for February.

    in reply to: What cancer center sees the most bile duct cancers? #34849
    sara
    Member

    Randi,

    I know Mayo is far, but they are very good about getting you in quickly. Plus they see approximately 300 patients every year, which is far more than other institutions. Dr. Steve Alberts is the oncologist that specializes in this area at Mayo, and has good bedside manner. Maybe you could send your tumor slides to them, and have them work up a second opinion remotely. They do this sometimes.

    in reply to: The love of my live….is gone #35199
    sara
    Member

    Jennifer,

    I’m so sad to read this. My thoughts and prayers go out to you and the family. No one should have to face this cancer. Based on everything I’ve read, you are an amazing soul, and a great wife. He is blessed to have you by his side through it all, as you are blessed to have him with you through your life. You are both too young to have to face such harsh realities.

    There is a family here that will always love and support you.

    -s

    in reply to: Off to Orlando GI ASCO #34820
    sara
    Member

    Enjoy the conference, Marion! I’m sure it will be another productive meeting, and we all look forward to hearing the details.

    in reply to: The journey ends #34059
    sara
    Member

    Big hugs to you all. I wish no one had a reason to google “bile duct cancer” or “cholangiocarcinoma.”

    My oldest sister died suddenly in a car accident in 1992. One of my closest friends, Kelly Lester, died from cholangiocarcinoma in 2006. Having experienced the shocking death from my sister’s car accident, and the year-long death that Kelly endured, I would prefer facing the car accident every single time. The grieving is different in both circumstances, with most of the grieving in Kelly’s case happening before she died. Regardless, it took me months to manage the pain in both cases, and years to finally learn how to live with it and remain focused on the fun stories rather than the end story. And in both instances, I think the journey evolved rather than ended. I rather like how my journey with Kelly evolved into joining Stacie, Rick, Marion, and numerous doctors in the pursuit for the CURE. I like to think that Kelly alternates between being proud of these efforts, and making fun of me for being so ridiculous at times.

    I wish you all my very best, and hope your journeys soon evolve into more happy days than sad ones. All our love and support goes out to you.

    in reply to: Sensitive: Signs of Approaching Death #34072
    sara
    Member

    Excellent information, Marion. Glad that you were able to work this out.

    Something that the hospice worker shared with us during the last days of Kelly’s life: it’s the rule of 3’s. You look for 3 things to coincide: (1) the patient stops eating, (2) the patient stops drinking, and (3) the patient stops urinating. Once all three of these coincide at the same time, and continue to coincide, the patient generally passes within 72 hours (3 days).

    in reply to: Cholangiocarcinoma Awareness Month #31981
    sara
    Member

    While the poll is drawing to a close, I thought I’d start asking for ideas for the Awareness month. I thought it would be nice if we did something every day of the month. Maybe a mix between press releases, events, interviews, etc.

    Any clever ideas?

Viewing 15 posts - 16 through 30 (of 185 total)