On February 28, 2009, the Cushing's Support and Research Foundation hosted our first ever Cushing's Patient Education Day at the Intercontinental Boston Hotel. About 120 participants, including patients and their family and friends, attended this day long meeting. Louise Pace, CSRF President commented, “This day is truly a milestone. We all know how important it is to have excellent information about Cushing’s and how important it is to understand the recovery process and be able to speak with others who have been impacted by Cushing’s”.

Several other attendees commented about the meeting. “THANK YOU!!!! Thank you so much for all your efforts in making this event happen. I learned so much and was reassured that I am not going crazy. I learned that my symptoms are normal for those of us in remission, and I learned the importance of following my cortisol levels. I cannot begin to tell you how important this day was for me.” “I would just like to say thank you and congratulations on the success of the Cushing's Patient Education day. I was overwhelmed by the whole experience. Aside from the wealth of information you provided to all of us, you also provided a forum where we all could finally feel we were amongst others who understood exactly what we'd each been through (and some were still going through.) Every person wants to be understood and in the forum you provided, I finally felt I was in a room with people who all understood me.” Throughout the day, patients were able to interact with each other and ask questions of experienced physicians and nurses during the panel discussions.

The CSRF would like to thank the speakers that made this day so valuable including, Dr. Karen K. Miller, Dr. Beverly MK Biller, Dr. Anne Klibanski, Dr. Lisa Nachtigall, Dr. Brooke Swearingen, Dr. Elena Valassi, Dr. Madhu Misra, Michelle Gurel, BSN, RN and Karen JP Liebert, BSN, RN, all from Massachusetts General Hospital in Boston as well as Dr. Edward Laws from Brigham and Women’s Hospital in Boston and Dr. Lynnette Nieman from NICHD at NIH in Bethesda, MD.
The program started off with an overview of what the pituitary gland does by Dr. Miller. Dr. Miller discussed all of the different hormones produced by the pituitary including ACTH, which stimulates the adrenal to make cortisol; TSH, which stimulates the thyroid gland to make appropriate amounts of thyroid hormones; growth hormone which influences growth and lean muscle mass; LH/FSH which are involved in reproduction; and prolactin, which is needed for breast-feeding.
The next talk, given by Dr. Biller, discussed the signs and symptoms of Cushing’s and the different types of Cushing’s; pituitary, adrenal and ectopic. Dr. Biller also discussed what happens to ACTH and cortisol with each type of Cushing’s. Dr. Klibanski discussed the multitude of tests for Cushing’s, why they are done, what they mean and why no one test is sufficient for diagnosis of Cushing’s. Dr. Nachtigall discussed the importance of properly locating the cause of Cushing’s once the diagnosis is established. Differentiation of pituitary versus ectopic ACTH secreting tumors often require a petrosal sinus sampling test to confirm a pituitary source of ACTH. Dr. Brooke Swearingen discussed pituitary surgery and radiation treatment, complete with MRI scans and a video of a transsphenoidal pituitary surgery. Michelle Gurel looked at the patients perspective of what to expect prior to surgery and after surgery. In the panel discussion that followed these talks, many attendees were able to ask important questions and obtain expert answers.

Following lunch, Dr. Valassi discussed the different categories of drugs that are in use or under study to decrease cortisol levels. There are drugs that work at the adrenal level, for example ketoconazole, to decrease the output of cortisol. Others drugs work at the pituitary level, for example pasireotide (SOM 230) that is currently under study to decrease ACTH. Another type of drug that is currently under study is Mifepristone (Corlux), which acts at the cellular level to decrease the effects of elevated cortisol. Karen Liebert, then discussed what a clinical trial is, the different stages of trials, participation in a clinical trial and highlighted a few current trials that are underway for medical treatment of Cushing’s.
Dr. Misra, a Pediatric Endocrinologist, then discussed pediatric Cushing’s, which differs somewhat from adults in its presentation. In children, weight gain is more generalized and growth slows or plateaus with weight gain. Low bone density, hypertension and increased risk of infection are similar to adults, but children less often show thinning of skin or bruising and muscle weakness. Children differ from adults also in behavior and mood, in that children are less likely to suffer depression and sleep problems and are more likely to show obsessive compulsive behavior. After treatment, growth can return to normal unless Cushing’s is treated late in puberty when growth is complete or near complete, however complete catch-up of growth may not occur. Concentration and memory problems can be observed after treatment and may affect school performance for an indeterminate length of time.

Dr. Laws then discussed the effect of high cortisol on the brain and brain functions. Dr. Laws showed numerous MRI scans that illustrate that during Cushing’s, at about 3 years, there is brain atrophy. Following cure, the brain can recover by unknown mechanisms over a period of time. Brain atrophy is most likely related to the memory and cognitive difficulties associated with Cushing’s.

Dr. Nieman then discussed quality of life following Cushing’s. It is well known that during active Cushing’s, quality of life is dramatically decreased. After cure, quality of life does greatly improve, however some patients do not return to the quality of life of the normal population. After treatment, the most common residual symptoms include fatigue, forgetfulness, sleep difficulties, depression, weight gain, decreased muscle strength and anxiety.

A following panel discussion revolved around attendees questions related to emotional, cognitive and quality of life issues. Many excellent questions were asked and from the patient’s perspective, it was encouraging to see physicians addressing the quality of life questions.

Editor’s Note: Further resources for what was covered during the presentations and included in an information packet include:

General information on Cushing’s from the Pituitary Society:
http://www.pituitarysociety.org/public/specific/cushing

General information on Cushing’s from the Hormone Foundation: http://www.hormone.org/Resources/Adrenal/loader.cfm?csModule=security/getfile&pageid=874

Information on clinical trials can be obtained at www.clinicaltrials.gov using Cushing's as the key word.

For questions about pituitary surgery, see FAQ by Brook Swearingen at www.CSRF.net—Doctor's Articles

A consensus statement about ACTH dependent Cushing's that was published - JCEM, Biller, et al, July 2008, 93 (7):2454-2462 - you can read the abstract at: http://ncbi.nlm.nih.gov - select PubMed in the database to search and use Biller BMK as the search, or Cushing's if you'd like to look at what has been published.