Leslie Edwin Everything about this event was special. The agenda was created by a steering committee of 36 patients, and the conversations about the agenda formed the basis for a 140-question survey that went out to membership via e-mail between January and the beginning of February 2020. After our last national conference in 2017, there… Continue Reading
Author Archives: Isabel Paterson
Neuropsychological and Emotional Functioning in Patients with Cushing’s Syndrome
Sabrina Na, Mary A Fernandes, Adriana G Ioachimescu, Suzanne Penna. Behavioural Neurology. 2020, article id 4064370, https://doi.org/10.1155/2020/4064370 Changes in structure and function of the brain during Cushing’s have been documented, and we patients know from personal experience the cognitive and emotional difficulties faced during active disease and post-op. Patients treated at Emory University Hospital in… Continue Reading
Bilateral Adrenalectomy in 21st Century: When to Use it for Hypercortisolism?
The purpose of this study was to examine existing treatments and outcomes for a variety of pituitary, adrenal, and ectopic tumors in comparison to treatment with a bilateral adrenalectomy (BLA). Two major sources of research and other medical literature from 1950 through 2015 were searched using six related terms. The results were analyzed with specific… Continue Reading
A Quality of Life Comparison Between US & German Patients
On September 3, 2018, Dr. Ilonka Kreitschmann-Andermahr of the University of Duisburg-Essen and her team received news that the manuscript for their first-of-its-kind, patient-reported quality of life research had been accepted for publication in the International Journal of Endocrinology. The CSRF was happy to participate in this research, with former Director Karen Campbell contributing valuable… Continue Reading
Marked Response of Hypermutated ACTH-Secreting Pituitary Carcinoma to Ipilimumab and Nivolumab
In this case, a 40-year-old female with Cushing’s was being treated at Memorial Sloan Kettering Cancer Center (MSK) in NYC for an aggressive ACTH-secreting pituitary carcinoma. She had tried several treatments including multiple surgeries, radiation, and chemotherapy. It had metastasized to her liver, and the pituitary tumor was producing ACTH at extremely high levels –… Continue Reading
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