What's New?

May 14, 2003

To read the HTML version of this newsletter, or the archives, on the Internet, please click here

In This Issue:Member NewsSite News Meetings NewsChat Info

Important!

Please read the chat directions below, so you're ONLY in the Cushing's Room, not both Cushing's and Power Surge. Many people end up being in both rooms, instead of only one.



Next Online Newsletter will be Wednesday, May 21
read archived issues here.
Birthdays:Other Celebrations:
• Shel, May 21
• Leleiny, May 23
• bogie56, May 24
• Rebekah, May 25
• Laura Hartlep, May 26
• Jayne and Robin are expecting
• Sue is recovering!
• Cookie is home (again!) and getting better every day!
• Melinda Freels, is finally finished with 6 weeks of daily Fractionated Stereotactic Radiation
Upcoming Surgery:Currently Recovering:
• CJ (Christine), Left Adrenal Surgery, May 21
• Pat (pat@wtp), Toe Surgery, May 30
• JudyL, Second pituitary surgery, NIH, June 9
• Edith, Fibroid Surgery, (subtotal hysterectomy or just plain hysteria), July 14, Lions Gate Hospita

Pituitary
• D'Shawn Russell
• Gloria
• Lynn P
• Daphne
• Dina
• Jinxie
• Arlene
• Jaime
• Rikki
• Duncan (Karen)
• Cat
• Dana
• Dee (deleciab)
• Cherri in AL
• Linda P. (tinydogpries)
• BrendaC
• Darren Shore
• Erin G.
Adrenal
• SteveB
• Allie
• Sam
• Teri T
• CathyR
• bp50 (Barb Power)
• Angela Kaiser
• Melinda 2
• Deborah's son, Curtis, from a second adrenal surgery
• Suzanne
• Debbie
• Kathie Mcconnell (kamaroon)
• Denise
Other
• SandieK, gamma knife at Ohio State
• Sue (SuziQ) is recovering from a bronchoscopy and a collapsed lung from pneumonia.
• Melinda Freels, 6 weeks of daily Fractionated Stereotactic Radiation
• Luisa (LSpriggs), gamma knife at UVA
• Sean S, Ectopic, thymus removed
• Dori, gamma knife at UVA
News!
• Download the Hotel Reservation Information (Word File) for Portland, OR, CUSH meeting, October 2003, here.

If you must call them instead of filling out this form, the number is 503-221-1611 and for the special rates, you need to say that you're with:
Group Name: Cushing's Understanding, Support and Help Organization
For this Event: Cushing's Organizations 10.03
Dates: October 14-19, 2003
Map: Map to the Convention Site

• F.A.Q. every week a new FAQ (Frequently Asked Question) from the Archives is put on the intro page of the website

• There are now 1433 members on the Message Boards

• 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 Organization Newsletter is also available from that same link.

• A list of Current CUSH Organization members is available here.


Newest Bios:
To add or edit your bio, please click here.
Carla Constant Update
Just diagnosed!
Right Adrenal Gland Tumor
Canada
David (Mirage) Not Yet Diagnosed Ironton, Ohio
Deb (falnanglnc) Adrenal Austin, Texas
Liz Linzmeier Pituitary Surgery
August 2002
Reedley, CA
Shauna Pituitary, Adrenal
Pictures added
Vancouver, WA

• 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:
Decorative Candles:
Julia (Spencer's Mom) is beginning to make food oriented candles - shaped like sundaes, pies, and other desserts. She will donate 20% of the proceeds to CUSH and she's even trying to making a candle in the shape of the CUSH pin!

Please allow 2 weeks for delivery, as each candle is hand poured.  E-mail jwahlton@cfl.rr.com.  20% of proceeds will be donated back to CUSH.  Payment is made via Paypal only to jwahlton@cfl.rr.com.  Once order is placed we will send you a Paypal invoice for payment, which will include shipping charges. 


Cape Cod Candles:
Lynn in Va Cushieinvirginia@msn.com) has an idea for a CUSH fundraiser. There is an optional lid and a platter to go underneath.

These would make terrific Secret Someone gifts and you'd be helping CUSH out at the same time!

The candles are all pure Cape Cod candles. The total cost is 15.00 per candle including shipping/handling. Sherri has offered us her commission, $3.00 for each candle that is sold, to go to our CUSH Organization.

For an order form, please email Cushieinvirginia@msn.com or download here in Excel format.

Please send checks with orders to:
Sherri Blakeman
7808 Knollwood Street
Brandywine, MD 20613


You may also email orders to Sherriblakeman@comcast.net and mail the checks to her.

Many thanks to Lynn and Sherri!

Burden Bears:
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."

The Cushing's Store
for all kinds of Cushing's Labled clothing, coffee mugs, totebags and much more. Great for your endo or Secret Someone.
Remember iGive.com...
... all year round.

iGive.com allows online stores to donate a percentage of their profit to running these Cushing's Support sites (the message boards, http://www.cushings-help.com, http://www.CUSH.org, http://www.cushings-support.com and http://www.cushingsonline.com) at no cost to you. So far, members have raised $226.55, and it hasn't cost them a cent.

Extended Deadline! Extra! Extra! Read all about it. $5 Free Donation. Through July 31, 2003, (extended deadline) each new member who registers at iGive and shops will earn an additional $5 for these Cushing's Support sites. That's on top of the standard of up to 26% from their shopping. Only hitch - they've got to shop within 45 days of joining. With over 410 stores now at iGive.com, they've got some great choices.

See the list of participating merchants.


Recent Amazon Purchases: what happens?

Amazon is longer available on iGive.com, so it will not be possible to place new orders which qualify for donations. Also, orders shipped after April 23, 2003 do not qualify for iGive credit, even if they were placed prior to April 16, 2003. If you have not already done so, please report all your existing Amazon.com orders through the Transaction Reporting Form: http://www.iGive.com/html/missingtrans.cfm

The deadline to report Amazon orders placed through iGive.com is June 23, 2003.

Contacting Amazon.com

Several members have written to us requesting contact information for Amazon.com. Many of you wish to voice your displeasure at Amazon's recent decision to leave iGive.com. To that end, here are a few ways to contact Amazon.com, if you so desire:

E-mail Amazon's Associates Program: associates@amazon.com Contact Amazon's Customer Service: http://www.amazon.com/help

Mail a letter to Jeff Bezos:

Mr. Jeff Bezos
Chairman and CEO
Amazon.com, Inc.
1200 12th Ave., Ste. 1200
Seattle, WA 98144


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've added another speaker (thanks Cookie!), a neurosurgeon who works with Dr. Cook's patients. His name is Dr. Johnny Deleshaw, and he's the one who performed Kelly and Emilie's surgeries.

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.

Our rooms are booked at the Days Inn City Center location. The cost for a single room suite is $59.00 for one or two beds with NO BREAKFAST or $69.00 for one or two beds with a Full American Breakfast. In either case, there will be an 11.5% occupancy tax. Both smoking and non-smoking are available. Download the Hotel Reservation Information (Word File) for Portland, OR, CUSH meeting, October 2003, here.

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.

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.

Download the Hotel Reservation Information (Word File) for Portland, OR, CUSH meeting, October 2003, here.

If you must call them instead of filling out this form, the number is 503-221-1611 and for the special rates, you need to say that you're with:
Group Name: Cushing's Understanding, Support and Help Organization
For this Event: Cushing's Organizations 10.03
Dates: October 14-19, 2003

Thanks to everyone - this is going to be one great conference!


• Upcoming Cushing's Lunch, May 17, 1:00, Hilltop Steakhouse, Saugus, MA. Lynne is setting this up. More info here.

•Upcoming Cushing's Lunch, May 31, Columbus, Oh area. Erin G is setting this up. More info here.

•Upcoming Cushing's Lunch, being rescheduled, Illinois and surrounding areas. Leslie is setting this up. More info here.

•Upcoming Cushing's Lunch, June 7, 1:00 PM, Columbia, SC. Renea is setting this up. More info here.

•Upcoming Cushing's Lunch, June 14 or 21, Edmonds, WA area. Deb is setting this up. More info here.

•Upcoming Cushing's Dinner, June 21, Philadelphia. Dr. Dori is setting this up. More info here.

• Sign up for notification of local meetings. You need not be a CUSH member to participate.

• 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.

• 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.

News
Clinical Trials (Listed on Acurian)

Clinical Research Study Available for Subjects Living with Type 2 Diabetes:
Simpsonville, South Carolina
Slidell, Louisiana
Centerville, Ohio
Cincinnati, Ohio
Eugene, Oregon
Pottstown, Pennsylvania
Greer, South Carolina
Spartanburg, South Carolina
Bryan, Texas

Clinical Research Study Available for Subjects Living with Type 2 Diabetes:
Slidell, Louisiana
Centerville, Ohio
Cincinnati, Ohio
Eugene, Oregon
Pottstown, Pennsylvania
Greer, South Carolina
Simpsonville, South Carolina
Spartanburg, South Carolina
Bryan, Texas

People With Type 2 Diabetes Needed…:
Montgomery, Alabama
Ozark, Alabama
Little Rock, Arkansas
Chandler, Arizona
Phoenix, Arizona (2 locations)
Tucson, Arizona
Greenbrae, California
La Jolla, California
Long Beach, California
Los Angeles, California
Northridge, California (2 locations)
Orange, California
Palm Desert, California
Pasadena, California
Redwood City, California
Santa Ana, California
Tustin, California
Walnut Creek, California
West Hills, California
Denver, Colorado
Waterbury, Connecticut
Newark, Delaware
Boynton Beach, Florida
Coral Gables, Florida (2 locations)
Melbourne, Florida
Miami, Florida (2 locations)
Pembroke Pines, Florida
Pinellas Park, Florida
Atlanta, Georgia
Duluth, Georgia
Honolulu, Hawaii
Iowa City, Iowa
Elk Grove Village, Illinois
Peoria, Illinois
Indianapolis, Indiana (2 locations)
Arkansas City, Kansas
Louisville, Kentucky
Richmond, Kentucky
New Orleans, Louisiana (2 locations)
Springfield, Massachusetts
Baltimore, Maryland (4 locations)
Bethesda, Maryland
Ann Arbor, Michigan
Berkley, Michigan
Troy, Michigan
Edina, Minnesota
Minneapolis, Minnesota
Columbia, Missouri
Florissant, Missouri
Kansas City, Missouri
St. Louis, Missouri
Charlotte, North Carolina (2 locations)
Durham, North Carolina
Hickory, North Carolina
Wilmington, North Carolina
Winston-Salem, North Carolina
Berlin, New Jersey
Colts Neck, New Jersey
Hillsborough, New Jersey
New Brunswick, New Jersey
Princeton, New Jersey
South Plainfield, New Jersey
Whitehouse Station, New Jersey
Albuquerque, New Mexico (3 locations)
Henderson, Nevada
Las Vegas, Nevada (2 locations)
Buffalo, New York
Endwell, New York
Mineola, New York
New Hyde Park, New York
New York, New York
Northport, New York
Rochester, New York (2 locations)
Syracuse, New York
West Seneca, New York
Portland, Oregon
Bala Cynwyd, Pennsylvania
Camp Hill, Pennsylvania
Carnegie, Pennsylvania
Monessen, Pennsylvania
Philadelphia, Pennsylvania (3 locations)
Reading, Pennsylvania
Upland, Pennsylvania
Carolina, Puerto Rico
Providence, Rhode Island
Bristol, Tennessee
Chattanooga, Tennessee
Cordova, Tennessee
Selmer, Tennessee
Austin, Tennessee
Austin, Texas
Corpus Christi, Texas
Houston, Texas (3 locations)
Midland, Texas
San Antonio, Texas (4 locations)
Ogden, Utah
Charlottesville, Virginia
Fredericksburg, Virginia
Norfolk, Virginia (2 locations)
Richmond, Virginia
Virginia Beach, Virginia
Olympia, Washington
Seattle, Washington
Vancouver, Washington
Janesville, Wisconsin
Marshfield, Wisconsin
Menomonee Falls, Wisconsin




From Medscape: http://www.medscape.com/viewarticle/453151

Spironolactone Cost-Effective in Idiopathic Hirsutism CME
News Author: Laurie Barclay, MD
CME Author: Bernard M. Sklar, MD, MS


April 28, 2003 — Cyproterone acetate, finasteride, and spironolactone are equally effective in the short-term control of idiopathic hirsutism, according to the results of a prospective, randomized clinical trial published in the April issue of Fertility & Sterility. But spironolactone was effective longer, and the investigators suggest that this treatment was also cost-effective.

"Spironolactone is a competitive inhibitor of aldosterone that competes with dihydrotestosterone in target tissues and has antiandrogenic properties," write Francho Lumachi, MD, and Riccardo Rondinone, MD, from the University of Padua in Italy.

Forty-one women with idiopathic hirsutism who had requested use of an oral contraceptive were randomized to 12 months of treatment with cyproterone acetate, 12.5 mg/day for the first 10 days of the cycle; finasteride, 5 mg/day; or spironolactone, 100 mg/day.

At completion of treatment, the Ferriman-Gallwey score decreased by about 39% in all three groups. One year after treatment, the Ferriman-Gallwey score in the spironolactone group was 6.74 ± 1.41, significantly lower than in the cyproterone acetate group (7.92 ± 1.08) or the finasteride group (9.08 ± 0.99). The androgenic profile did not change significantly during treatment.

"Spironolactone is especially useful for women in whom an oral contraceptive alone is ineffective," the authors write. "The combination of spironolactone (100 mg/day) and a monophasic oral contraceptive was effective for a longer time than was treatment with the other two drugs and was cost-effective."

Fertil Steril. 2003;79:942-946

Clinical Context Many women seek treatment for unwanted hair growth. These women initially should be evaluated for endocrine abnormalities and these abnormalities should be treated when found. About 80% will be found to have treatable abnormalities. The other 20% will be found to have idiopathic hirsutism.

Hirsute women with both normal ovarian function (history of regular and ovulatory menstrual cycles), and normal circulating androgen levels are considered to have idiopathic hirsutism. Hirsutism affects 5% to 10% of women, depending on their ethnic group. Many of these women will request treatment for idiopathic hirsutism.

A commonly used method to grade hair growth is the modified scale of Ferriman and Gallwey, in which each of nine androgen-sensitive sites is graded from 0 to 4. These areas are the upper lip, chin, chest, abdomen, pubic area, legs, back and buttocks.

According to Danforth's Obstetrics and Gynecology, there is no drug currently approved by the U.S. Food and Drug Administration for the treatment of hirsutism. In milder forms of hirsutism in women not satisfied cosmetically with mechanical removal, an oral contraceptive pill may be the best first-line drug. Spironolactone and cyproterone have previously been shown to be equivalent in effectiveness. Cyproterone is not available in the U.S. In more severe forms of hirsutism, a GnRH agonist (Buserellin) plus an oral contraceptive may be chosen over flutamide or ketoconazole, particularly when hepatic problems are a concern. Finasteride appears to have the fewest adverse effects of all and may be very effective in treating women with a low or no risk of pregnancy.

Study Highlights
  • 41 young women (median age, 21 years [range, 18-34 years]) with idiopathic hirsutism who had requested prescription for an oral contraceptive.
  • Inclusion criteria were a modified Ferriman-Gallwey score of 6 or greater, regular menstrual cycles of 21 to 35 days; progesterone levels greater than 13 nmol/L in the luteal phase; normal circulating serum levels of free T, DHEAS, androstenedione and 17-hydroxyprogesterone. The mean Ferriman-Gallwey score at the beginning of treatment was about 11 to 12.
  • No patient had any other disease or had received oral contraceptives or antiandrogenic drugs in the previous two years. Patients with abnormal results on routine laboratory tests were excluded.
  • Patients were randomized to 12 months of treatment with cyproterone acetate, 12.5 mg/day for the first 10 days of the cycle; finasteride, 5 mg/day; or spironolactone, 100 mg/day. All patients also received an oral contraceptive during the two-year study.
  • After one year, the Ferriman-Gallwey score decreased by about 39% in all three groups. One year after treatment ended (two years from the start of the study), the Ferriman- Gallwey score in the spironolactone group was 6.74 ± 1.41, significantly lower than in the cyproterone acetate group (7.92 ± 1.08) or the finasteride group (9.08 ± 0.99). The androgenic profile did not change significantly during treatment.
  • The authors conclude, "Spironolactone is especially useful for women [with idiopathic hirsutism] in whom an oral contraceptive alone is ineffective. The combination of spironolactone (100 mg/day) and a monophasic oral contraceptive was effective for a longer time than was treatment with the other two drugs and was cost-effective."

Pearls for Practice
  • Cyproterone acetate, finasteride, and spironolactone, given along with an oral contraceptive, were equally effective in reducing unwanted body hair during the period of administration of the study drug (one year).
  • The effect of spironolactone was more persistent (one year after treatment ended) than was cyproterone acetate or finasteride.


About News CME News CME is designed to keep physicians abreast of current research and related clinical developments that are likely to affect practice, as reported by the Medscape Medical News group. Medscape Medical News Coordinator is Deborah Flapan. Clinical review is provided by Gary Vogin, MD. News CME is managed by Elliott Silverman. Send comments or questions about this program to cmenews@webmd.net.

Medscape Medical News 2003. © 2003 Medscape
Legal Disclaimer The material presented here does not reflect the views of Medscape or the companies providing unrestricted educational grants. These materials may discuss uses and dosages for therapeutic products that have not been approved by the United States Food and Drug Administration. A qualified health care professional should be consulted before using any therapeutic product discussed. All readers and continuing education participants should verify all information and data before treating patients or employing any therapies described in this continuing medical education activity.


Women With Pituitary Problems Wanted For A Testosterone Study

Purpose: Testosterone is the principal male sex hormone but is also present in smaller amounts and may be important in women. Among its likely actions in women are the building of bone and muscle mass, increase in interest in sex (libido) and effects on the mood. The role of testosterone replacement in women with low testosterone levels is currently being studied. In this study, you will be given an experimental preparation of a testosterone gel which will be applied on the skin of your outer thigh for up to 2 months. It is anticipated that this experimental gel application will produce levels of the drug in the normal range for women. A further aim of this study is to assess whether female patients with dysfunction of the pituitary gland have abnormalities in body composition, muscle strength and thinking and sexual function.

Criteria for subjects:

  • Women ages 18 to 50.
  • Hypopituitarism with documented central adrenal and gonadal deficiencies, on conjugated equine estrogen replacement
  • Serum testosterone level of < 20 ng/dl or free testosterone <1.5 pg/ml (can be tested at study site)
  • written informed consent
  • No other significant medical condition
  • Patients must discontinue their current testosterone replacement

Number of patients-15
Location: King/Drew Medical Center in Willowbrook and UCLA in West Los Angeles
Enrollment Period: Winter-Spring 2003
Patient Compensation: $500
For more information or subject referrals contact:
Ted Friedman, M.D., Ph.D. Clinical Director Telephone (323) 563-9353 Email: mail@goodhormonehealth.com Fax: (323) 563-9352 Charles R. Drew University of Medicine and Sciences 1731 E. 120th St. Los Angeles, California 90059

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.

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!


~~~~~~~~~~~

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