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    Profile picture of Kevin mark
    Kevin mark Aug 18 2017 4:02 am

    Colorectal Cancer: No Longer the Issue in Familial Adenomatous Polyposis?

    Familial adenomatous polyposis (FAP) is a dominantly inherited colorectal cancer (CRC) syndrome with an untreated lifetime prevalence of CRC close to 100% and extracolonic manifestations (ECM) of increasing clinical significance. This study examined the effect of systematic callup and prophylactic colectomy on FAP survival. Patients diagnosed, treated and followed-up at our

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    rareLife demo Aug 10 2017 3:51 am

    bambakurru

    Fee Cullen

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    Ashleyshows Aug 9 2017 9:43 am

    So we just left the surgerons office. I am thinking we will be having her surgery in December while she is on Christmas break because my step daughter who is 8 has FAP just started school and the surgeron said it could take 3-4 weeks for her to recover. My question is if you have had a jpouch how long did it take for you to just recover from surgery? He also said a lot of people get that infection afterwards I forget what he called it. But have a…Read more

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    Ashleyshows Aug 8 2017 4:39 am

    Hey there everyone! We just found out my step daughter who is 8 has FAP which we knew my step daughters would have it because their mother had it. She sadly passed away from complications from a surgery. Callie (my 8 yr old) had her first colonoscopy and endoscopy on July 21st. Found 500-1000 polyps in her large intestine and some in her stomach. None were precancerous or cancerous so that's good. But we met with a surgeon tomorrow and they are …Read more

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    john roberts Aug 2 2017 5:56 am

    Sulindac/Erlotinib Combo Tested in Patients with Familial Adenomatous Polyposis

    A lower duodenal polyp burden was seen after 6 months of treatment with sulindac and erlotinib vs. placebo among patients with familial adenomatous polyposis (FAP), a study published in JAMA reports.

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    john roberts Aug 2 2017 5:48 am

    Tucson drug startup launches gastric-cancer trial

    Tucson-based drug startup Cancer Prevention Pharmaceuticals Inc. has announced the launch of a Phase 2 clinical trial at Vanderbilt University Medical Center to test the company’s flagship drug candidate for preventing gastric cancer.

    The drug, CPP-1X, will be studied in patients with precancerous gastric lesions who are at high risk for gastric cancer, the company said Monday.

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    john roberts Aug 2 2017 5:48 am

    Tucson drug startup launches gastric-cancer trial

    Tucson-based drug startup Cancer Prevention Pharmaceuticals Inc. has announced the launch of a Phase 2 clinical trial at Vanderbilt University Medical Center to test the company’s flagship drug candidate for preventing gastric cancer.

    The drug, CPP-1X, will be studied in patients with precancerous gastric lesions who are at high risk for gastric cancer, the company said Monday.

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    john roberts Aug 2 2017 5:48 am

    beating bowel cancer

    Most people who develop bowel cancer have no family history of bowel cancer. However, for around 25% of all bowel cancer cases diagnosed in the UK there is a family history. Generally speaking, the more members of the family affected by bowel cancer, and the younger they were at diagnosis, the greater the chance of a family link.

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    john roberts Aug 2 2017 5:47 am

    Atlanta Gastroenterology Associates

    AGA, established in 1976, is the largest gastroenterology practice in the southeast dedicated to the evaluation and treatment of both digestive and liver diseases. AGA has a long, successful track record in performing colonoscopies. Over time, colonoscopies have actually become a routine procedure and most are now performed at AGA's outpatient endoscopy centers. In addition, AGA works with its patients' primary

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    john roberts Aug 2 2017 5:47 am

    Atlanta Gastroenterology Associates

    AGA, established in 1976, is the largest gastroenterology practice in the southeast dedicated to the evaluation and treatment of both digestive and liver diseases. AGA has a long, successful track record in performing colonoscopies. Over time, colonoscopies have actually become a routine procedure and most are now performed at AGA's outpatient endoscopy centers. In addition, AGA works with its patients' primary

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    Profile picture of rareLife demo
    rareLife demo Aug 2 2017 10:32 am

    5 Things to Know When You’re Dating a Person With an Ostomy

    Maybe we told you about this months ago and you’ve been mulling the thought of going further over; maybe we told you over cocktails on our first date. Maybe we met on a disability dating website; maybe we hunted you down on something less savory.

    But here’s the situation — your significant other might not have one of their urinary or digestive organs.

    Here’s some know-how

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    polypsaplenty Jul 30 2017 6:09 am

    Have you folks ever experienced stricture and how do you know if you have one? I sometimes get to the point where I feel partially blocked, and then just wait for a few days to let it pass without eating bad food. But recently, I'm having trouble using the bathroom and I suspect stricture. Sorry I've been posting so much recently!!

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    LifesaPolyp Jul 26 2017 8:20 am

    I'm feeling uninspired and would love to hear what others would be interested in reading about/learning about through Life's a Polyp blog. I'm excited to be getting to review CBD Oil for pain but that won't be ready until September. So if you have any ideas, I'd love to hear them!

    Thanks in advance.

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    Community Mgr. Jul 24 2017 2:22 am

    Could use some advice. What are some of the things you do when FAP has you feeling down or stressed? What about coping with the initial diagnosis? Are there things you do in the in-between, day to day moments when you may not be actively thinking about FAP to help prevent or minimize the impact of these FAP-induced feelings?

    Any tips about approaching the emotional impact of this disease are appreciated and could benefit fellow FAPers who could…Read more

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    Community Mgr. Jul 20 2017 7:40 am

    Heads up: There's a new phase 2 trial in the works for people with precancerous gastric lesions who are at high risk for gastric cancer by Cancer Prevention Pharmaceuticals (which is working one of the only FAP-focused clinical trials). Have you participated in a clinical trial before?

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    Kevin mark Jul 17 2017 5:23 am

    https://www.fapvoice.com/rarepoll-single/?poll=1

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    JoyceWarrior Jul 9 2017 9:28 am

    Hey everyone! I do apologize for not being on for a while. I guess you can say life and our wonderful diseases hit me and overload at times. Was working to get discharges for student loans, my work long term disability approved to continue and of course doctor appointments always set up.
    I recently, a few weeks ago, had a couple day stay in the hospital. I had a bowel obstruction. This one I guess was a little worse than others. But thankfully I …Read more

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    Aakbary Jun 30 2017 9:24 am

    Am new and I'm not sure how to deal with this diagnosis. How r u guys dealing with this? Can purple love looking life's? How do you guys deal with the potential for surgery? Is there a cure in the works?

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    Community Mgr. Jun 22 2017 4:31 am

    Patients and physicians aren't so different (or at least in their opinion of the impact of years of polypectomies and scopes on bowel function) according to our High Risk Adenoma surveys. What are your thoughts? https://www.fapvoice.com/rarepoll-single/?poll=24&utm_content=buffer6db3c&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

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    dlow Jun 19 2017 7:38 am

    Hi - we would love your participation in a poll to understand the various diagnoses that members of the FAPvoice community may have received. This very quick poll is open to all members of the community: patients, caregivers, medical professionals, etc.: https://www.fapvoice.com/rarepoll-single/?poll=15

    If you've already taken it, there are many other FAP-related polls in our poll center: https://www.fapvoice.com/rarepoll-listing/

    As with all …Read more

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