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    RobinoSz_ns Nov 20 2018 7:42 am

    2014 northeastern destination x ride

    This ride is all about photographing colorectal cancer(diagnosed under the age of 50), Familial Adenomatous Polyposis(FAP) and desmoid tumor survivors for the 500UNDER50BEFORE5O & FACEiT Projects. I will also be capturing the sights along the way. The ride makes it start from Harpers Ferry, WV (one of my favorite places in the east), and will follow the Appalachian Trail to it's northernmost point in Maine.

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    RobinoSz_ns Nov 20 2018 7:32 am

    Introduction to Scientific Journal Literature

    https://www.youtube.com/watch?v=ZoYeSM0VI7U

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    RobinoSz_ns Nov 20 2018 7:28 am

    lillypad

    https://lillypad.eu/entry.php?e=57

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    RobinoSz_ns Nov 20 2018 7:27 am

    Non-Surgical Management of Attenuated and Deleterious (Classical) Familial Adenomatous Polyposis: A Long-term Surveillance Program

    The primary objective of this chart review study is to evaluate the outcomes of subjects with Attenuated Familial Adenomatous Polyposis (AFAP) and Deleterious Familial Adenomatous Polyposis (FAP) who have not undergone surgical resection of the colon. A secondary objective of this study is to compare 1) the colonoscop

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    RobinoSz_ns Nov 20 2018 7:20 am

    Prevention of Progression of Duodenal Adenomas in Patients With Familial Adenomatous Polyposis

    Duodenal carcinomas are the leading cause of mortality in patients with Familial Adenomatous Polyposis (FAP) who underwent prophylactic colorectal surgery. The purpose of this study is to determine wether celecoxib combined with ursodeoxycholic acid is an effective chemoprevention strategy to influence the progression of duodenal adenomas to carcinomas i

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    ajincitrus Nov 20 2018 7:12 am

    https://www.fapvoice.com/rarepoll-single/?poll=6

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    ajin_ns Nov 20 2018 6:01 am

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

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    RobinoSz_ns Nov 20 2018 5:01 am

    A Distinct Mutation on the Alternative Splice Site of APC Exon 9 Results in Attenuated Familial Adenomatous Polyposis Phenotype

    A subset of APC mutation carriers shows a milder familial adenomatous polyposis phenotype (attenuated FAP) developing smaller number of polyps and colorectal cancer at an older age. It seems that a different mechanism to carcinogenesis is initiated according to the initial site of the germline mutation. The APC gene of a

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    RobinoSz_ns Nov 20 2018 4:58 am

    #FamilialAdenomatousPolyposis

    FAP hashtag for the community

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    catherine95 Nov 19 2018 6:28 pm

    Hi all...does anyone take any supplements/vitamins that they feel has helped reduce size and number of polys. Has anyones doctor recommended ( or other wise not recommended)taking anything specific. I have read that turmeric, fish oil , B and D vitamins and maybe calcium can help reduce the overall growth of polyps. Thanks for any feedback.

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    catherine95 Nov 15 2018 4:03 am

    My daughter has been recenly diagnosed. We are researching the top places /and docs to treat FAP. Does anyone have any feedback on where to get most current and best rated treatment and care. She has only had a colonoscopy and multiple polys removed at this time and is waiting on further gentic testing. If this is not the right place on the site to ask questions like this..could someone guide me. Thanks for your help

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    jen325basile Nov 13 2018 4:41 pm

    Background: I was diagnosed at 40 with duodenal cancer in December 2017. Also had a stomach full of polyps and colon with about 100. I had a whipple that removed my tumor, 1/2 stomach, 41 lymph nodes, gall bladder and 40% pancreas. A month later I had liver Mets. At 41, a genetic screen showed I had APC gene mutation and FAP. My last colonoscopy was in April, still had about 100, and they cleared out 14 precancerous polyps.
    They have told m…Read more

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    akress Oct 9 2018 2:25 pm

    Hi there.

    I was diagnosed one year ago at 36 years old with FAP. My wife and I want to have a baby, but have had received mixed messages. My gi doc says go ahead and have babies and we will screen them. My colorectal doc sent me to a genetic counselor and now everything is as clear as mud. I feel that everyone is pushing me towards IVF with PGD but we don’t necessarily feel like that’s always the best answer.

    Long story short, there is no …Read more

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    Lauralynn1027 Sep 26 2018 8:38 pm

    I'm new here. Hello. I'm Laura. I am 34 and was diagnosed at 18. Kind of traumatic for me. We knew there was a chance it was FAP, but I was kind of hoping for something not as serious.
    Now, 15 years later, I have fought with depression, suicidal thoughts, suicidal attempts, anger, frustration, hypochondria, being overweight, eating disorders... you name it.
    I hate having this. I hate living with it. Somedays I don't notice it but then on day…Read more

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    Wednesday Sep 11 2018 3:45 am

    I was diagnosed with Fap at age 37 in 2003. No family history of the disease, apparently mine was sporadic. In 2005 blood tests results stated that they could not find my mutation and that blood tests for my kids would be useless. I am just wondering if things have changed since then and if there might be a way now to find my mutation now so we can test my boys by blood work. I asked about repeating test but was told at the time my results would …Read more

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    angela anu Aug 9 2018 12:43 am

    familial adenomatous polyposis and papillary thyroid cancer

    I recently saw a 35-year-old man with a family history of familial adenomatous polyposis. A 39-year-old brother recently died from metastatic colon cancer. His mother and sister were also afflicted and have had colectomies. The patient himself has not had any colon polyps identified on colonoscopy. He has a multinodular goiter with several subcentimeter nodules. The largest nodule was ben

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    SLB3 Aug 7 2018 1:22 pm

    I was diagnosed with FAP last month and facing 2-part surgery to remove the colon and rectum along with a mucosectomy. Can ayone share their experience with this exact surgery...recovery, post-surgery issues like incontinence? Thank you!

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    cjpjrr3 Aug 5 2018 1:53 pm

    I have temporary ileostomy as of 7/20 and it is retracted (alot) and have not found what product and process works well they always leak. I changed bags becauase of leakage 9 times with 1 and 1/2 days. I average changing it twice daily. The longest one stayed success fully was 2 1/2 days. I would greatly appreciate to hear from people that had similiar problem and what worked for them. Some parts of my skin is doesn't even look like skin. It…Read more

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    prathitha Jul 26 2018 12:58 am

    Young-Onset Colorectal Cancer: Earlier Diagnoses or Increasing Disease Burden?

    Colorectal cancer (CRC) incidence and mortality in the United States have changed strikingly in recent decades. Overall, CRC incidence decreased by >30% from 1975 (59.5 per 100,000) to 2013 (37.9 per 100,000).1 CRC mortality similarly declined from 28.1 per 100,000 in 1975 to 14.5 per 100,000 in 2013—nearly a 50% decrease. Screen-eligible populations, particularly

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    prathitha Jul 26 2018 12:53 am

    Young-Onset Colorectal Cancer: Earlier Diagnoses or Increasing Disease Burden?

    Colorectal cancer (CRC) incidence and mortality in the United States have changed strikingly in recent decades. Overall, CRC incidence decreased by >30% from 1975 (59.5 per 100,000) to 2013 (37.9 per 100,000).1 CRC mortality similarly declined from 28.1 per 100,000 in 1975 to 14.5 per 100,000 in 2013—nearly a 50% decrease. Screen-eligible populations, particularly

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