What's New?

Birthdays:	Other Celebrations:
• MarieBlank's Birthday, December 11 • qltpatti's Birthday, December 11 • Jeannine's Birthday, December 14 • Carl's Birthday, December 16 • Suzannerhs' Birthday, December 17 • Nancy Cornish's Birthday, December 18	• Preacher Mark's Mother, Anna Ruth Wells, will NOT need surgery. • Winter Celebrations and Festivals!
Upcoming Surgery:	Currently Recovering:
• Debbie, adrenal surgery in December. • Leslie, torn cartilege surgery, December 17 • Darren Shore, Surgery, in mid-late December	Pituitary • Erin • Libby • Judy • Cookie • Miri • Jenny • Jenny's NIH roommate	Adrenal • Kathie Mcconnell (kamaroon) • Denise • Lora • Julye • Joyce • Deborah's son, Curtis • Searching5
	Other • Dori, gamma knife at UVA • Cookie had a pacemaker installed November 4, and another pituitary surgery December 3

News!

• There are now 1118 members on the Message Boards • A Medical Journal to print out and take to your doctor. An Excel Worksheet version is also available. Start at http://www.cushings-help.com/journal.htm. The symptoms lists will be converted to Excel spreadsheet format soon. • We welcome your articles, letters to the editor, bios and Cushing's information. Submit a Story or Article to either the snailmail CUSH Newsletter or to an upcoming email newsletter at http://www.cushings-help.com/newsletter_story.htm A no-obligation free sample of the CUSH Newsletter is also available from that same link. • A list of Current CUSH members is available here.. Newest Bios: cris and her daughter cris has a prolactinoma Her daughter is being tested for Cushing's New Jersey Vance Steroid induced Before and during pictures   • The Toll-Free number is now operational. Volunteers are getting the schedule worked out. (877) 825-0128 • If you've been diagnosed with Cushing's, please participate in the Cushing's Register The information you provide will be used to create a register and will be shared with the medical world. It would not be used for other purposes without your expressed permission. Note: This information will not be sold or shared with other companies. Lynne Clemens, Secretary of CUSH Org is be the person responsible for the creation of this register. If you have any questions you may contact her at lynnemc@attbi.com. You do not have to be a member of CUSH to fill out this questionnaire, as long as you are a Cushing’s patient. We do not believe that the world has an accurate accounting of Cushing’s patients. The only way to authenticate accuracy is with actual numbers. Your help will be appreciated. Thank you."

Fundraising:

PJ (Paula) is making some fancy holiday cards. Part of the profits will benefit CUSH. Pictures will be available on the site soon. Natalie has been collecting some money for CUSH. She says: "I am making "Burden Bears" and selling them at my craft shows and I am donating $1 from each sale... ...So far I have collected about $20 for us." Remember iGive.com... ...for all your holiday shopping, and all year, too. iGive.com allows online stores to donate a percentage of their profit to running these sites at no cost to you. So far, members have raised $217.82, and it hasn't cost them a cent. See the list of participating merchants. Thank you so much for your support! Thanks to all of you for these clever Fundraising ideas. CUSH can always use funds to help us all, by spreading the word and helping others. What can *you* do to help CUSH?

Upcoming Local Meetings:

• Shauna has been busy setting this up...CUSH is proud to announce that we are planning a meeting for October of 2003 in beautiful Portland, Oregon. We have arranged to have Dr. David Cook of Oregon Health Sciences University speak to our group. Dr. Cook is an Cushing's expert and we are honored to have him speak. We are also arranging to have additional speakers, including (hopefully) a neuropsychologist and a gynecologist, to help us with all that goes with Cushing's Syndrome. We are tentatively looking at booking our rooms at the Embassy Suites, Portland Airport location. The cost for a single room suite is $109, about $130 after taxes. Your room will include a breakfast. The rooms are very nice and spacious. We will have both smoking and non-smoking available. The dates will be: October 16, 17 and 18th, with departure on the 19th. Our schedule will be as follows: Thursday: General meeting of CUSH, one hour CUSH officers meeting, evening cocktail hour. Friday: Conference with our speakers and a catered lunch, courtesy of CUSH. Dinner out that night (we'll provide selections). Saturday: FUN!! We're looking at either a boat ride down the Columbia Gorge or possibly at train ride down the Gorge. Sunday: Hugs, tears and goodbyes There will be a small charge (donation, tax deductible) to attend the conference, but we are sure it will be worth every cent. Many of us are putting in lots of work to make this an unforgettable, yearly event. We will invite you to tell your doctors about this - YOU NEED NOT BE A MEMBER OF CUSH TO ATTEND. We will have materials available for you to post and give your doctor to promote this event. It will be very professional and we will have some fun events planned. Here's what we need from you before we sign a contract: If you would like to attend please let us know if you'd be willing and able to book a room. Remember, you can always share a room. We will be committed to 20 rooms per night, and need to fill all rooms. If you're in the local Portland area and want to attend, but not take a room, please let us know. We are setting a date after which attendance will be restricted. Tentatively, we are looking at until June for Conference attendance and July as the last time to book a room. All of this is subject to change, as we're still ironing out details. Please let us know ASAP if you believe you can attend and if you'll need a room. Also, if you can indicate if you believe this is 100% firm, that would be great. We will be signing a binding contract that could cost CUSH more money than we have if people don't show up. We're trying to avoid that by getting your thoughts and attendance. Thanks to everyone - this is going to be one great conference! • Friday and Saturday, April 1-3, 2004. Pituitary Days Convention for Doctors and Patients at UVa, Charlottesville, VA. More information here. There will be many people from the message boards there. CUSH will have a meeting during this time, as well. • New pictures in the Photo Gallery from the last CUSH meeting in Columbus, Ohio. Erin took these: http://www.cushings-help.com/photo_gallery.htm • Pictures from this year's convention are available in the Photo Gallery, http://www.cushings-help.com/photo_gallery.htm • Pictures from last year's convention are available at http://www.cushingsonline.com/Convention1.htm • Tentative Atlanta area meeting. Carol Perkins, former model - Victoria's Secret, Harper's Bazaar, Vogue, and the founder of Harry Barker in Savannah - has agreed to share her inspiring story. More information, as it becomes available, or check here • More upcoming local meetings are listed here. • To list other local meetings, please send an email.

New Studies:

• Eighty-one (81) NIH Cushing's Protocols have been updated at http://www.cushings-help.com/current_trials.htm From NIH Clinical Trials listings Search term: CARNEY COMPLEX Defining the Genetic Basis for the Development of Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the Carney Complex Conditions: Cushing's Syndrome; Hereditary Neoplastic Syndrome; Lentigo; Neoplasm; Testicular Neoplasm Search term: ECTOPIC New Imaging Techniques in the Evaluation of Patients with Ectopic Cushing's Syndrome Condition: Cushing's Syndrome Study of Adrenal Gland Tumors

Research:

Localization of pituitary adenomas by using intraoperative ultrasound in patients with Cushing's disease and no demonstrable pituitary tumor on magnetic resonance imaging. By: Watson JC, Shawker TH, Nieman LK, DeVroom HL, Doppman JL, Oldfield EH. Surgical Neurology Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland 20892-1414, USA. OBJECT: Pituitary surgery has been reported to produce remission of Cushing's disease with preservation of pituitary function in only 60 to 70% of patients. The inability to identify an adenoma accounts for most failed sellar explorations. Most negative surgical explorations occur in patients in whom magnetic resonance (MR) imaging of the pituitary demonstrates normal findings, which happens in at least 35 to 45% of patients with Cushing's disease. METHODS: To examine the usefulness of intraoperative ultrasonography (IOUS) for identifying an adenoma in patients with no demonstrable tumor (negative findings) on pituitary MR imaging. we prospectively assessed the results of IOUS in 68 patients with a negative (59 patients) or equivocal (nine patients) MR image from a consecutive series of 107 patients with Cushing's disease (64%). We compared surgical findings and outcomes in these 68 patients with a group of 68 patients with Cushing's disease and negative findings on MR imaging in whom IOUS was not available. Intraoperative ultrasonography localized a tumor in 47 (69%) of 68 patients with negative findings on MR imaging. Surprisingly, the size of the adenomas that were detected with IOUS compared with the size of those not detected did not differ (6.8+/-3.4 mm compared with 6.1+/-2.8 mm [mean+/-standard deviation], respectively [p=0.51). In four patients, no adenoma was found at surgery or in the pathological specimen ("true negative"). In eight patients, nine abnormalities detected by IOUS that were suspected adenomas were negative on exploration ("false positive"). Thus, IOUS has a sensitivity of 73% and a positive predictive value of 84% for detecting pituitary adenomas in patients with Cushing's disease and negative findings on MR imaging. Compared with the 68 patients who did not undergo IOUS. remission after surgery was improved (61 patients [90%] compared with 57 patients [84%]), the number of tumors found on exploration was increased (61 tumors compared with 51 tumors, p=0.02), and the number of hemihypophysectomies was decreased (five compared with 15; p=0.02) with IOUS. When the groups were compared after excluding patients with prior pituitary surgery, tumors were found in 91% versus 72% (p=0.008), and remission occurred in 95% versus 87% of patients, respectively, in the groups that had or did not have IOUS. CONCLUSIONS: The IOUS is a sensitive imaging modality when used in patients with Cushing's disease in whom findings on pituitary MR imaging are negative. The improved ability to detect and localize these tumors by using IOUS positively affects surgical outcome.

Online Chats:

Please join us in the Chat Room (click here, and then continue on to TheCushingsChat. See directions below.) The next scheduled chat is TONIGHT at 9 PM, Eastern, when we will discuss Cushing's, troubles with diagnosis, symptoms and much more. Important! The chat room has been updated and will look different to folks who have been around before - there are some new features, and some of the old ones have moved to a new place, so it might take a little getting used to. People who do not have Java on their browsers may use another version of the chatroom. Please be sure to continue on to TheCushingsChat. While you're in the Power Surge room, click on the black "X" at the top of the room ( Not the X in the blue circle) This will put you in the area where you can see all the rooms listed. You'll see the one to the list that says TheCushingsChat. Double click on that name to get into the room. People in the main Power Surge room may be talking about menopause and will have no clue what Cushing's is. They will not be able to help in any way....unless you have menopause issues to discuss, too! If you do have menopause issues, be sure to return on Thursday nights at 9 eastern for wonderful information, guest speakers and camaraderie. Not sure how these times relate to where you are? Here's a Time Zone Converter Directions: When you enter the Chat Room (http://sites.chatspace.com:8350/): 1 Enter a nickname for yourself (it would help everyone if you use the same name you use to post...but it's not necessary). NO Password is required. Your password from the boards will not work, unless you register it after you are in the chatroom. More features are available when you are registered, but it is entirely optional. If your chosen name doesn't work, it means that someone else has registered it. Pick another name and try again. You may also choose a font size at the sign-in window, under "Options". 2 Push the "LOGIN button" You will be in my friend's Power Surge Chat Room. 3 On the top, left side, you will see a tab that says "Rooms". Click on that and there will be a list which includes the TheCushingsChat. Click on the name to get in. I hope to see you tonight! ~~~~~~~~~~~ Cushing's Help and Support at http://www.cushings-help.com Cushing's Message Boards at http://www.cushings-support.com/cgi-bin/ib3/ikonboard.cgi Subscribe and Unsubscribe: Cushing's Newsletters and Chat Reminders http://www.cushings-help.com/aim.htm#reminder

Join us at: E-mail: CushingsSupport@aol.com On the Web: Cushing's Help Website Cushing's Help and Support Web Boards CUSH: Cushing's Understanding, Support and Help