Re: Attenuated FAP

Posted By HFHSM.D.-ym on April 26, 1999 at 14:30:19PbrTopic Area: Digestivebr: Hello,br: I am a 38 y/o female, I have an APC gene mutation in segment 4. The diagnosis was Attenuated Gardner's uuSyndrome. I have one skull osteoma.p: Colonoscopy: 2 small adenomatous polyps removed from right colonp: EGD: Small area of stomach polyps, Duodenum was clearp: Abdomen & pelvic CT: Normalp: My father 65 has had multiple abdominal surgeries for this syndrome. Presently he has metastic liver cancer from his colon. Paternal grandfather 88 has visible skull osteomas and palpable abdominal masses. Brother 40 has jaw osteoma and 4 polyps (1 adenoma) removed. p: For unrelated orthopedic conditions I have been on Daypro 1200mg 6/95-7/98, Sulindac 400mg 8/98 (stopped, ulcer), Arthrotec 150mg 10/98-1/99 (stopped, ulcer), Celebrex 200mg 2/99 to present. I am wondering if my use of NSAID's could have slowed down the FAP progression? I know there have been a past study on Sulindac and an unpublished recent study of Celebrex, but I am unaware of any on Daypro or Arthrotec.p: My GI doctor recommends retesting in 2 years, does this sound correct? I'm asking because my father's cancer was very aggressive, originated in his cecum and developed  to 4th stagebr: over a 14 month period between colonoscopies.p: I'm so pleased that this forum is available to us!p: Thank you, Tonyabr:   pDear Tonya,pStudies in familial adenomatous polyposis and the use of non-steroidal inflammatory drugs and aspirin have generated much enthusiasm. Sulindac has been shown in several studies to decrease the number and size of colorectal adenomas in patients with FAP. The mechanism by which sulindac causes polyp regression in FAP is unknown, but felt to be secondary to its ability to inhibit an enzyme called cyclooxygenase (COX 2). This enzyme is important in the formation of compounds called prostaglandins. Prostaglandins have a variety of effects throughout the body. Since other NSAIDS work by a similar mechanism, it is poss

[Tonya__0]

Posted By Tonya on April 26, 1999 at 19:46:58

Dear YM,
Thank you for the information, it confirmed much of what I've learned over the past few weeks. I'm now in touch with an FAP researcher here in Western NY State, who has been very helpful and will be overseeing my future treatment. Since my original post I've had a clear abd/pelvic CT and other than some fundic polyps a clear EGD. However I've learned my excessive scar tissue from various orthopedic surgeries and a lump previously diagnosed as Myofascial in my upper right trap, are in all likelyhood extraabdomenal Desmoid tumors. This did not make my day...I've been advised the decision of when I'll need a colectomy will be made on a annual basis, dependent on colonoscopy findings.
Thank you again for your help! Tonya










Follow Ups:


Re: Attenuated FAP HFHSM.D.-ym 4/27/1999
(0)