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Viewing 15 posts - 9,796 through 9,810 (of 9,870 total)
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  • in reply to: Genetic testing/strong family history #16726
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    Moderator

    I have subscribed to “Google Alert” topic Cholangiocarcinoma. This is what I have received today and thought to pass it on.

    “Hannin is a 44-year-old woman from the Hunlock Creek area who was diagnosed eight months ago with Cholangiocarcinoma. This devastating disease is a rare form of cancer which invades the bile ducts and the liver.

    Proceeds will help defer Hannon

    in reply to: 15 month check-up.. everything still looks good. #16711
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    Mary,

    can’t thank you enough for sharing this with us. What wonderful news.

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    in reply to: my dad #16788
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    Jules,

    the news I was hoping so much not to hear.

    I will be thinking of your Dad and hoping and wishing for a turn- around for the better.

    Sending tons of love and hugs
    Marion

    in reply to: Family history #16733
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    Sarah,

    This is the summary of some of my research on cancer:

    Although, this doesn’t specifically answer your question, some of it does address it.

    It is all about the studies and how to fund such studies.

    There is very little research in re: to CC and I believe, these are some of the reasons:

    The problem with cancer is the way it is researched.
    In the past it was common for a clinician to come up with a hypothesis in re: to treatment and test it out in the lab. Not anymore. It requires large amounts of capital, which is almost impossible to come by and virtually nonexistent for anyone who has not spent his or her career in laboratory. (Researcher)

    I believe that most research is done by the drug companies thus leaving out the researcher or clinician with a great idea but who has now way of funding further investigations. (This includes large medical institutions)

    It takes about $1 billion dollars to bring a new drug to the market. The cost is staggering. So you can bet that there is not one pharmaceutical company willing to make this kind of investment without realizing a healthy return. They will try to bring a new drug on the market and have it patented in order to recoup their investment.

    There may very well be products out there already in use, not protected by a patent, which could be highly effective to the patient, and for minimal cost, but they have not been tested further since the money for clinical trials and other evolving costs will not justify the return on anyone

    in reply to: My heart is healing one day at a time #16700
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    Dear Joyce,

    Unfortunately, we are not prepared to deal with the magnitude of anguish coming our way when a loved one passes. Hoping so much for your pain to diminish.

    Hugs
    Marion

    in reply to: My heart is healing one day at a time #16699
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    Dear thecdr,

    I hope my writing did not upset you. I have been reading your postings as they appear on this site, with dismay.

    Peter once greeted a new member with: “Welcome to the club no one wants to belong to.” What a poignant statement on his part.

    We are all members with the common bound of hope, fear, anguish and pain.

    My heart goes out to you.

    Hugs
    Marion

    in reply to: Oh my god the pain is so deep! #16686
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    Dear Macks,

    My heart goes out to you, and I so very much understand your pain. I too have lost my husband, the love of my life. He passed away February 7, 2007.

    During the last seven months I have experienced different stages of grieving, the disbelief, the yearning, the anger, the depression, until now, finding myself teetering with the acceptance of the reality that he simply will not return.

    My yearning for him has not diminished in fact; it has become my constant companion.

    I never knew how to live just

    in reply to: Today is 4 years from my successful Klatskins surgery #16538
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    Dear Peter,

    Congratulations, Peter. What wonderful news and thank you for sharing this.

    Those of us involved in the fight against this cancer thrive on good news such as yours, thus allowing our spirits to stay high in order to move forward in this battle.

    Hoping and wishing for many more wonderful posts.

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    in reply to: 3 year old with cholangiocarcinoma #16501
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    Dear Cindy,

    this is beyond anything I have ever encountered while researching this cancer. Have you contacted other specialists in order to confirm the diagnoses?

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    in reply to: questions you wish you would have asked #16451
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    Hello rrutherford6,

    So sorry to hear about your Mom.

    It is very difficult to know the questions to ask when we are confronted with a disease especially a cancer such as CC, rarely occurring, with very little research to rely on.

    If you have the time to do so, try to read as much as possible on this site. I realize it being time consuming, but it will give you a wealth of information, which in turn will give you the power of knowledge, which then will lead you to ask informed questions.

    Also, when consulting with any physician, my family would take along a Dictaphone.
    We asked the doctor

    in reply to: Worried! #16488
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    Angiecat,

    I am so very sorry to hear about your Mom. Please, don’t give up hope.

    There are cases where bone had been invaded by CC. I believe Caroline Stouffer also has written about it in her blog.

    Best of everything
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    in reply to: Dendritic cell vaccine therapy #14793
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    Jules,

    I am so very relieved to hear such good news about your Dad, Geoff. He has chosen a treatment widely overlooked and not recognized in the medical community, and yet the side effects are tolerable. Hoping for everything else to be falling in to place, also.

    Hugs
    Marions

    in reply to: Need Help #16338
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    Hello Joyce,

    to find the blogs: click on Wiki on top of page. You will see Family Blogs on bottom. right hand side.

    Goood Luck
    Marion

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    Thank you Evan and Patricia,

    The radiation my husband had received twenty years prior to the development of CC, had caused scarring and deformation in his abdomen, thus making it highly unlikely for him to respond positively to any chemo compound. It was a unique situation.

    My love to all of you,
    Marions

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    Hello Nancy,

    my husband and I returned to California from Boston after surgery with his drainage tubing in place. We did not encounter any problems.

    All the best to Ron and you.

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Viewing 15 posts - 9,796 through 9,810 (of 9,870 total)