NIH Cushing’s Syndrome Survey

Posted on June 4, 2011 by MaryO

Information about this survey and your consent to participate

Patients with Cushing’s syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing’s syndrome. We want to learn more about the patients’ experience during the post-surgical recovery phase with particular reference to quality of life. We are inviting patients like you who have had surgical treatment to complete the survey. Your responses will be gathered anonymously and will be treated confidentially; we hope to use them in a publication so that other physicians can learn about these issues.

Please kindly complete the following online questionnaire which is comprised of approximately 27 questions and should take around 15 minutes.

Take the survey here: http://csrecoverypatient.nichd.nih.gov/cssurvey/patientaccept.html

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NIH Cushing’s Clinical Trials

Posted on June 4, 2011 by MaryO
Rank Status Study
1 Recruiting Safety and Efficacy of LCI699 in Cushing’s Disease Patients

Condition: Cushing Disease
Intervention: Drug: LCI699
2 Recruiting Preoperative Bexarotene Treatment for Cushing’s Disease

Condition: Cushing’s Disease
Intervention: Drug: Bexarotene
3 Recruiting Rosiglitazone in Treating Patients With Newly Diagnosed ACTH-Secreting Pituitary Tumor (Cushing Disease)

Condition: Brain and Central Nervous System Tumors
Interventions: Drug: rosiglitazone maleate;   Other: laboratory biomarker analysis
4 Unknown † Study of Depression, Peptides, and Steroids in Cushing’s Syndrome

Condition: Cushing’s Syndrome
Intervention:
5 Recruiting Examination of Brain Serotonin Receptors in Patients With Mood Disorders

Conditions: Mood Disorder;   Bipolar Disorder;   Depression
Intervention:
6 Recruiting An Investigation of Pituitary Tumors and Related Hypothalmic Disorders

Conditions: Abnormalities;   Craniopharyngioma;   Cushing’s Syndrome;   Endocrine Disease;   Pituitary Neoplasm
Intervention:
7 Recruiting Prospective, Open-Label, Multicenter, International Study of Mifepristone for Symptomatic Treatment of Cushing’s Syndrome Caused by Ectopic Adrenal Corticotrophin Hormone (ACTH) Secretion

Condition: Cushing’s Syndrome
Intervention: Drug: Mifepristone
8 Recruiting Anesthesia Management of Retroperitoneal Adrenalectomies

Condition: Adrenal Tumors
Intervention:
9 Recruiting 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
Intervention:
10 Recruiting New Imaging Techniques in the Evaluation of Patients With Ectopic Cushing Syndrome

Condition: Cushing Syndrome
Intervention:
11 Recruiting Adolescence, Puberty, and Emotion Regulation

Conditions: Mood Disorder;   Neurobehavioral Manifestation;   Healthy
Intervention:
12 Recruiting Insulin Sensitivity and Substrate Metabolism in Patients With Cushing’s Syndrome

Conditions: Cushing’s Syndrome;   Insulin Resistance
Intervention: Procedure: Surgery
13 Recruiting Study of Adrenal Gland Tumors

Condition: Adrenal Gland Neoplasm
Intervention:
14 Not yet recruiting Adrenalectomy Versus Follow-up in Patients With Subclinical Cushings Syndrome

Condition: Adrenal Tumour With Mild Hypercortisolism
Intervention: Procedure: Adrenalectomy
15 Recruiting Assessing Fertility Potential in Female Cancer Survivors

Condition: History of Cancer
Intervention:
16 Recruiting Study of Pasireotide in Patients With Rare Tumors of Neuroendocrine Origin

Conditions: Pancreatic Neoplasm;   Pituitary Neoplasm;   Nelson Syndrome;   Ectopic ACTH Syndrome
Intervention: Drug: Pasireotide LAR
17 Recruiting Adrenal Tumors – Pathogenesis and Therapy

Conditions: Adrenal Tumors;   Adrenocortical Carcinoma;   Cushing Syndrome;   Conn Syndrome;   Pheochromocytoma
Intervention:
18 Recruiting Prevalence of Pituitary Incidentaloma in Relatives of Patients With Pituitary Adenoma

Condition: Pituitary Tumor
Intervention:
19 Recruiting Safety and Effectiveness of Granulocyte Transfusions in Resolving Infection in People With Neutropenia (The RING Study)

Conditions: Neutropenia;   Infection
Interventions: Drug: Standard antimicrobial therapy;   Biological: Granulocyte transfusions;   Drug: G-CFS/dexamethasone;   Device: Apheresis machine

Filed under: adrenal, Clinical trials, Cushing's, pituitary, Rare Diseases | Tagged: , , , , , , , | Leave a comment »

40 Days of Thankfulness: Day Twenty

Posted on November 3, 2010 by MaryO

Today is a very special day for me.  I am thankful to so many, named and unnamed.  This is the 23rd anniversary of my pituitary surgery at the NIH in Bethesda, Maryland.

I couldn’t have gotten to surgery without a myriad of books from the public library, my parents who watched my son while I was at NIH for 6 weeks pre-op, an oncologist, the endo who got me there… So many, and so many years of sickness just trying to get diagnosed.

I won’t bore anyone with my “story” but if anyone is interested, it’s available here.

The short version is that I knew I was sick starting about 2003.  No doctors would offer any help.  A chance description of Cushing’s convinced me that this was what I had.  Even when I presented Xerox copies of medical texts to doctors, they would all say that I couldn’t have it.  It was “too rare”.  I was fat.  I cheated on my diet.  I was depressed.  Go away.  Take drugs.

I finally got to an endo who got me into NIH in 2006.  During six weeks away from home as an in-patient, they diagnosed me with pituitary Cushing’s.

For those who don’t know, here’s where the pituitary gland is:

I had a 7 year old son and I was sure I was going to die during surgery, if not before. I wrote letters “just in case”.  I was terrified of what could happen and also what would happen if I never had surgery.  I knew I couldn’t live with the Cushing’s.

A college contempory of mine wasn’t so lucky.  Luckily, I didn’t read this in the Alumni magazine until after my surgery. She had the same operation. She came from my home town. We  had the same major at the same college, we were the same age. We had the same surgical and medical team. I recovered. The other woman died during surgery.

So, today, on my 23rd anniverary, I am thankful that I saw my son grow up, that my husband stuck with me, that I’m still alive, that I’m able to help others beat Cushing’s…

Thanks to Dr Edward Oldfield, NIH, nurses, doctors, Fairfax County Public Library and how it all worked out in the end.

Filed under: Cushing's, pituitary, Thankfulness | Tagged: , , , , , , , , | 1 Comment »

40 Days of Thankfulness: Day One

Posted on October 10, 2010 by MaryO

Filed under: Cushing's, Thankfulness | Tagged: , , , , , | Leave a comment »

Ten Years of Cushing’s Help and Support!

Posted on July 21, 2010 by MaryO

Ten years ago yesterday I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself.  We decided that I could.

This website (http://www.cushings-help.com ) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else’s life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

The message boards are still very active and we have weekly online text chats, live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Things have changed over the years, though.  The original Cushings-Help site is still updated with new bios, new Helpful Doctor listings, meetings and more but all new articles have moved to a new site – http://www.cushie.info/ – which is much easier to maintain than the older strictly-HTML site.

Also new are a CushieWiki, several blogs (of which this is one), three Facebook entities (Cushing’s Help Cause; Cushing’s Help and Support Group; and the Cushings Help Organization, Inc.); a Twitter stream and much more.

New recently:

NEW! Daily News Summary at Cushing’s Daily News

NEW! cushie.info is now optimized for viewing on PDAs and mobile phones

NEW!  Medical Centers. These are centers which specialize in Cushing’s, pituitary or adrenal patients.  If you, as a patient, have one that you’d like to have added, please send any info you may have to Mary O’Connor (MaryO).  Thank you!

Occasional Newsletters are Back: Members of cushie.info will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing’s knowledge provided by *YOU* and other patients.

Members of the cushie.info site have additional features:

We’ve grown out of control from that simple one-page info sheet to way more than I could have ever imagined in that phone conversation with my friend.  I would never have thought that I could do any of this, provide these services and touch the lives of so many others.

I also never thought that I would spend hours a day updating, adding, improving, helping, emailing, phoning, paperwork, writing…

But it’s all worth it if the lives of other Cushies are made better.

Here’s to another 10 years…

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