Taxonomy of patient users-cancer pt,internet info.&clinical encounter

Discussion Board Forums Websites Taxonomy of patient users-cancer pt,internet info.&clinical encounter

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  • #61020
    pcl1029
    Member

    Hi,
    Thanks ,Gavin,
    I was preparing for the ASCO 2012 convention and came across this article.
    It is a lot of articles to read in preparing for such event. I glanced over the entire ebook they put up on the web; and only a few articles is related to bile ducts ,liver and the pancrease.
    They will release the posters on the web tomorrow and I will do the same to look them over and choose the one that is related to our disease and try to ask the author if I will see them at the convention.
    this year,they change the policy about putting all posters up at the same time;ASCO will put up the “most regarded” or ” important or distinguish” posters each day to increase the attention of those highlighted research article.
    and follow by a discussion sessions.
    I will also attend a session about “the new drugs in oncology”-including Vemurafenab;Crizotinib;Brentuximab;Abiraterone;Ipilimumab and Axitinib.
    I think only one or two will be of great interest to us for CCA;but down the road,they maybe of use to us as well since most of them are for treating solid tumors.
    Be sure to say hi to your mum for me,it is warmer and sunny to-day here in Chicago. and I know the weather is not that inviting;but you got the Prince of Wale to be your weatherman.I am sure his royal touch of the weather will be magical. It should be sunny and bright with a gentle wind blowing from the sea.
    God bless.

    #61019
    marions
    Moderator

    Dr. Helft is quite aware of our organization and I am pleased to read his postive comments re: our discussion board.
    Dr. Helft is the Director, Fairbanks Center for Medical Ethics. He was panel member at last years Patient Advocate Symposium, which I attended.
    Thank you Dr. Helft and thank you Percy for bringing this article to our attention.
    Hugs,
    Marion

    #61018
    gavin
    Moderator

    Thank you for this Percy.

    #6826
    pcl1029
    Member

    Hi,everyone,
    I find something interesting in ASCO2012 ebook that is related to our site.
    It is written by Paul R. Helft MD.
    From this article by a practice doctor;you know knowledge is useful in requiring the doctor to keep current to answer your evdence-base questions getting from Internet resources,like our message board .But as a patient ,you also should know the most efficient way to get your answer and execute them thru of your doctors.ie: send them email in advance about your concern before appt.
    I think in this way,Internet usage will be of benefit to both the patient and doctor

    The Seeker
    Mr. B is a 63-year-old man with newly diagnosed intrahepatic
    cholangiocarcinoma. When he was first seen, he had a
    palpable mass; he was subsequently found to have a large
    adenocarcinoma replacing much of his atrophied left lobe of
    the liver, with extension into the right lobe. As time passes
    during his treatment, to which he has a major partial
    response, he raises issues he has encountered on the Internet,
    mostly after prompts from fellow patients he communicates
    with on the Cholangiocarcinoma.org message boards.
    One of the potential advantages of access to the Internet
    in the context of illness is that patients with uncommon
    cancers can form relationships online with other patients
    despite geographical and other barriers. For many patients,
    this ability to share experiences with other patients with the
    same disease is valuable and can provide an important
    source of emotional support. That said, I have found such
    Internet sources frequently lead to questions from patients
    that suggest they have difficulty sorting out what applies to
    them and what does not, having heard suggestions from
    other patients with the same diagnosis but whose circumstances
    may be radically different. Mr. B thus asks questions
    at each clinic encounter such as, “One of the patients
    from my message board had a liver transplant for his
    cholangiocarcinoma. Can I have a liver transplant?” At other
    times, he raises questions about clinical trials, hepatic
    intra-arterial infusion therapy, and surgical resection, all
    stimulated by comments from other patients. Each time he
    considers new information, such comments lead him to seek
    further information from other Internet sources and he asks
    clarification of his oncologist.
    Suggestions for management of Mr. B’s continued questions
    include focusing on the treatment options he raises and
    how they apply to patients in different circumstances, and
    explaining how these options have already been considered
    and why they do or do not specifically apply to him. The
    important message from both of these communicative suggestions
    is that the physician recognizes and validates the
    importance of the issues to him (and thus the discussion of
    them validates the sense that the physician is willing to
    explore other options with him). This discussion can be an
    opportunity to subtly reinforce the physician’s competence,
    as such questions enable the physician to show that he or
    she has already carefully considered the options raised.
    Finally, recognizing the importance of such online experiences
    for the patient can represent a meaningful occasion for
    validating the patient’s efforts to continue to investigate and
    understand his disease and options fully.
    God bless.

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