just a little vent

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    Very well said indeed Marion! And Kris, good vent, very well said also!

    Hugs to all,



    Marion, AMEN to what you wrote above. I didn’t have a clue that so many people will have Cancer. I agree totally that we will keep talking CC as I have most definitely seen a change in the last couple of years, small, but it is a change. Got to have HOPE and I see so much hope in our Members we could bottle and sell it! Mmmm do I see a Fund Raiser here????? :):)


    Board members of The Cholangiocarcinoma Foundation have had and continue to have communication with the Walter Payton Foundation. It is not that the Walter Payton Foundation does not support cancer research however; they do not specifically focus on CC. They have chosen a different path altogether including, supporting inner city district children and other most honorable causes. Would we like it to be different? Absolutely we would.
    Presently I am reading this incredible book:


    Hi Kris and Lainy,

    I’m with you 100 percent. John just started on Xeloda today as he was having a hard time getting it approved. The cancer center here was trying to get the manufacturer to provide it, but they said they only furnished it to people with breast or colon cancer. You would think that they would want to know how other cancers were responding to it. Anyways, the center finally found a pharmacy that would provide it with John paying a $400 co-pay.

    Lainy, John and I actually met Walter Peyton at a convention and John has pictures of them together. He was very nice and down-to-earth. What a shame he was taken so young. He was a great football player. Speaking of football, we had snow on Saturday, and Kaden had to play that morning in the first game of the playoffs. The kids were freezing and miserable and most of them didn’t even want to play. Kaden got to quarterback the 2nd half and scored their only touchdown. They ended up losing so now it’s on to basketball. He had his evaluation tonight and should find out his coach next week.

    Pam, I hope Lauren’s last treatment went well; she sure is lucky to have someone like you fighting along beside her. Take care, PeggyP


    It’s funny you would mention this topic. Lauren and I are always wondering why some cancers get ALL the attention and her cancer gets nothing. We do think it is great that there is so much awareness for breast cancer, but couldn’t the spotlight be shared just a bit. I know it is because this cancer is so rare. Nobody I talk to has ever heard of cc. I sure never had before Lauren was diagnosed with it. We try to do our small part by wearing our cc wristbands. Some people do ask us about the bracelets. It is just really frustrating that not a lot is known about this disease.


    One of these days we will come up with a stellar idea with CC.ORG and make CC (unfortunately) a house hold word! To me the most amazing part of this is all of you!


    Little vents (and big ones too) are just fine here. Lainy, that’s just pathetic that Peyton’s family built a cancer center that doesn’t treat cc, although, truth is you don’t just grow a major cancer center very quickly AND there are very few of them in the US. It’s the only place I would consider for cc.


    Way to vent Kris! Both of my kids (27 and 30) feel the same way! My son just told me last week that he had just had a discussion with someone about Walter Peyton. Regarding the fact that the NFL supports breast cancer awareness and not CC. Which reminds me, I need to get my wristbands ordered!


    Wow, Lainy. I didn’t know that. Thanks for sharing that info.


    Kris, the story hit me the same way it hit you. I don’t understand why well known people don’t talk about or promote anything for what they might be suffering from. Like, Walter Peyton the famous Football Hero passed from CC. His family put up a Cancer Center……it does not treat CC. Go figure.


    While I don’t begrudge ANY cancers getting attention, I do have a problem when the news states incorrect “facts”.
    I know that breast and lung cancers prey on way, way, way too many people, causing too much death and suffering. I do not begrudge them having their own “months” as many more people are apt to experience breast, lung or prostate cancer than CC, especially. Which makes finding treatments very important.
    But being one of the 1%, I wish they would make a few more funds more available for these more obscure cancers. I was hoping when Steve Jobs got cancer that this would change at least a little, but I don’t see it happening. Mostly because he was not very outgoing about his journey. Unfortunately… Don’t get me wrong: I wish he hadn’t have had to go thru his cancer journey, but being pretty famous, it would have been nice of him to try to get his “rare” form of cancer out there for people to become aware of these rare cancers.
    What gets me is the local news in this area (Pennsylvania) announced that November is lung cancer month. To paraphrase: “Lung cancer is one of the biggest killers around, but it is the least funded of all the cancers”… WHAT???
    Again; WHAT??? I just wish I hadn’t been so tired that I forgot which channel it was so I could write to them and set their record straight…
    Just needed to vent.

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