Friday, January 29, 2010

My earlier patient-view reports

My earlier patient-view reports

Since 2000 I’ve been writing about Peutz-Jeghers syndrome for the PJS Online Support Group. My reports have included updates on medical journal articles, resources and explorations of topics of interest to people with PJS, their loved ones and health care providers.

Several of these reports are available at
is a wonderful resource created by Karen Oyler. It is of, for, by and about Peutz-Jeghers people & our gene (LKB1/STK11).

Unfortunately the information explosion has made it impossible to keep that website up-to-date.

This blog will hopefully serve as a news source for folks interested in PJS and the PJS gene (LKB1/STK11).

Rather than republish my earlier reports here, I will direct you to

You’ll find my patient-view reports on different PJS problems:

Heritable Colorectal Cancer Syndromes
(On PJS by Mayo Clinic’s Dr. Boardman)

Very High Risk of Cancer in Familial PJS
(An early report of cancer risk in PJS from Dr. Giardiello at Johns Hopkins)

How Many of Us Are There?
(My guesstimate, see also Frequency of Peutz-Jeghers syndrome at this site)

Intestinal Obstructions
(Adhesions, internal scar tissue)

Into the Bowels
(Bowel preps – needs updating as Fleet phospho-soda pulled from market in 2008)

Nasal Polyps
(Needs addition of mutation analysis of nasal polyps)

The PJS/Thyroid Connection
(review of literature & unpublished information from Dr. Stratakis at NIH)

PJS & Pancreatic Cancer
(Out of date! CAPS3 and CAPS4 trials now underway. See my first blog entry for newsletter information.)

Sex Cord Tumors
(Those microscopic, yet highly annoying tumors affecting female ovaries and male testicles)

Down There: Cervical Cancer in PJS

Testicular Tumors & Gynecomastia in PJS Boys

The LKB1/Lung Cancer Connection
(The PJS gene LKB1 has a role in lung cancer. There are some reports of PJS people with lung cancer, but no expert recommends lung cancer screening)

Unsolved Mysteries
(A new genetic testing method called MLPA has made much of this report inaccurate.)

Behind the Scenes of Cancer Screening
(Cancer screening in the general population is under fire. PJS people have a complex, expensive and confusing screening guidelines – this report attempts to help. Needs updating)

FAP (Familial Adenomatous Polyposis) & PJS
(A comparison of two different inherited cancer syndromes that include polyps)

And on history of PJS:

5th Anniversary Update
(My typo, should have been 6th anniversary. And now it’s 11! Needs updating.)

An Important PJS History
(Also needs updating, though the early history is still accurate)

Doctors Peutz & Jeghers and Their Patients
(Meet the men who gave us our eponym)

Drug Directions in PJS:

Drugs & PJS
(An early exploration, needs updating to include mTOR inhibitors, metformin, curcumin, resveratrol & other drugs

The COX-2 Trail
(An early drug-direction dead-end. Turns out COX-2 inhibitors increase risk of heart attack, stroke & death when used for polyp reduction. Oops.)

Also available are two reports by Andrew Wells:

Frequency of Peutz-Jeghers Syndrome
Cancer Risks in PJS Sufferers

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