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Hereditary Colon Cancer Takes Guts

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Attenuated FAP, Cowden Syndrome, Familial Adenomatous Polyposis, Gardner Syndrome, 

Hereditary Mixed Polyposis, Juvenile Polyposis Syndrome, Lynch Syndrome, Muir-Torre Syndrome, MYH-Associated Polyposis, Peutz-Jeghers Syndrome, Turcot Syndrome

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    Patient Wisdom

    Patient Wisdom
    About Clinical Trials
    Benefits & Risks
    Before Participating
    Trial for FAP
    ClinicalTrials.gov

    Question 14: What influenced your decision to participate in a clinical trial? Would you do it again? Would you recommend that others consider a clinical trial? Why? 

     

    Factoid: The National Cancer Institute provides information about the clinical trial process in new drug development and it's also a source of finding suitable studies for patients who desire to participate in clinical trials.

    If there is anything out there that could possibly slow the appearance/growth/quantity of polyps, you bet, sign me up. If it will help others, I'm so there! Would do it again, and again, and again. Yes, the more that are able to participate, the more research data [there is] to work with, [helps us] have better data, [which leads to] better outcomes. - Kelly Livingston

     

    How can we treat/cure FAP without volunteers? Someone has to be the guinea pigs (so to speak). It was a no brainer! If there is something that can be done to treat/cure FAP, I want to know about it and benefit from it. Even though I am not passing this damned disease on, others are and there has to be an end to the disease one day. As for participating again in a clinical study…HELL YEAH! - Betty Starr

     

    I was 15 when my dad passed away from colon cancer. He participated in a clinical trial in the late 70's. His participation had to have helped me get better care. Yes, I have done it more than once. If giving blood before surgery, letting my tumor be examined or filling out something about my life helps beat cancer, I will help. - Tami Arnold

     

    I get free scopes by an expert. This is the main reason I chose to enter a study. You are helping yourself but also everyone else who has this disease. We need more people in studies. Many promising studies have been terminated due to poor patient turnout. - Brian Hanson

     

    I know how beneficial clinical trials can be, if not for me, then for possibly others in the future. Studies show that those who are sick with cancer and are willing to take risks with clinical trials are more likely to extend their lives or possibly even go into remission, depending on the cancer. - Georgia Hurst

     

    I was in a clinical trial in 1984-85 for dietary studies. It helped me in recovery and helped me to learn about my diet and how it relates to my health today. [Regarding others,] it depends on what the trial is about and if they feel it is worth their time and effort, and if there are risks…do they see them as practical. - Ed Minor

     

    [Yes,] Mayo was doing a study to bring new less invasive screening protocols to polyposis patients. I was there for my procedures and figured it was my duty to help in any way I could. [Regarding others,] sure, if you think it could help us fight these disorders and there is no risk to you. Have to weigh the risks/benefits. - Brooke Porretti

     

    Yes, but look at the results first. My liver is crapped out at the moment after the last study and I hope it gets better. - Nathan Anderson

     

    Yes, what a wonderful way to help, not just yourself, but others. - Charlie Henricks

     

    I would because you never know what new break through will be discovered. - Anonymous

     

    Yes I would do it again. How can we eradicate something if we don't work at it? If you are in the trial your treatment is covered. For another reason, I want to make forward gains on achieving the end of this gene. - Sandra Redlands

     

    Since I was only 13, I didn't understand any of it. My parents made the decision. I would absolutely do it again. [Regarding others,] it depends. I value the experience because I feel I contributed to the body of literature aimed at finding a cure, and also because it taught me a lot about how research on medicine is conducted. - Morgan

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