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Found 9 results

  1. Pituitary Tumors Affect Patients’ Ability to Work, Reduce Quality of Life Pituitary tumor conditions, such as Cushing’s disease, have a substantial effect on patients’ work capabilities and health-related quality of life, researchers from The Netherlands reported. The study, “Work disability and its determinants in patients with pituitary tumor-related disease,” was published in the journal Pituitary. Pituitary tumors, like those that cause Cushing’s disease, have significant effects on a patient’s physical, mental, and social health, all of which influence their work status and health-related quality of life. However, the effects of the disease on work status is relatively under-investigated, investigators report. Here, researchers evaluated the work disability among patients who were treated for pituitary tumors in an attempt to understand the impact of disease diagnosis and treatment on their social participation and ability to maintain a paying job. In their study, researchers examined 241 patients (61% women) with a median age of 53 years. The majority (27%) had non-functioning pituitary tumors, which do not produce excess hormones, but patients with acromegaly, Cushing’s disease, prolactinomas, and Rathke’s cleft cyst also were included. Participants were asked to complete questionnaires to evaluate their health-related quality of life and disease-specific impact on their work capabilities. Each participant completed a set of five questionnaires. Participants also reported their hormonal status and demographic data, including gender, age, education, and marital status. Specific information, such as disease diagnosis, treatment, and tumor type was obtained from their medical records. Work status and productivity were assessed using two surveys, the Short-Form-Health and Labour Questionnaire (SF-HLQ) and the work role functioning questionnaire 2.0 (WRFQ). SF-HLQ was used to obtain information on the participants’ employment and their work attendance. Employment was either paid or unpaid. (Participation in household chores was considered not having a paid job.) WRFQ is a 27-question survey that determines work disability regarding being able to meet the productivity, physical, emotional, social, and flexible demands. A higher score indicates low self-perceived work disability. Disease-specific mood problems, social and sexual functioning issues, negative perceptions due to illness, physical and cognitive difficulties, were assessed using a 26-item survey called Leiden Bother and Needs for Support Questionnaire for pituitary patients(LBNQ-Pituitary). Overall, 28% of patients did not have a paid job, but the rates increased to 47% among those with Cushing’s disease. Low education, hormonal deficits, and being single were identified as the most common determinants of not having a paid job among this population. Further analysis revealed that more patients with Cushing’s disease and acromegaly had undergone radiotherapy. They also had more hormonal deficits than others with different tumor types. Overall, patients with a paid job reported working a median of 36 hours in one week and 41% of those patients missed work an average of 27 days during the previous year. Health-related problems during work also were reported by 39% with a paid job. Finally, health-related quality of life was determined using two questionnaires: SF-36 and EQ-5D. The physical, mental, and emotional well being was measured with SF-36, while ED-5D measured the health outcome based on the impact of pain, mobility, self-care, usual activities, discomfort, and anxiety or depression. In both SF-36 and EQ-5D, a higher score indicates a better health status. Statistical analysis revealed that the quality of life was significantly higher in patients with a job. Overall, patients with a paid job reported better health status and higher quality of life than those without a paid job. Although 40% of the patients reported being bothered by health-related problems in the past year, only 12% sought the help of an occupational physician, the researchers reported. “Work disability among patients with a pituitary tumor is substantial,” investigators said. “The determinants and difficulties at work found in this study could potentially be used for further research, and we advise healthcare professionals to take these results into consideration in the clinical guidance of patients,” they concluded. From https://cushingsdiseasenews.com/
  2. Cushing’s disease patients whose pituitary tumors carry a USP8 mutation are more likely to achieve remission after surgery than those without such mutations, a retrospective Italian study found. The study, “Clinical characteristics and surgical outcome in USP8-mutated human adrenocorticotropic hormone-secreting pituitary adenomas,” was published in the journal Endocrine. Cushing’s disease is a condition where a tumor on the pituitary gland produces too much of the adrenocorticotropin hormone (ACTH), which will act on the adrenal gland to make cortisol in excess. While rare, the condition can be life-threatening, as excess cortisol is linked to an increased risk of infections and cardiovascular complications, along with an increased likelihood of obesity and diabetes. The reasons some patients develop these pituitary adenomas are far from understood, but researchers recently found that some of these patients show mutations in the USP8 gene. These appear to increase EGFR signaling which, in turn, has a stimulatory role for the synthesis of ACTH. But more than influencing the development of Cushing’s disease, researchers believe the USP8 mutations may also determine response to treatment. Thus, a team in Italy examined whether patients with USP8 mutations presented different clinical features and responded differently to the standard surgical procedure, called transsphenoidal pituitary surgery. The study included 92 patients with ACTH-secreting pituitary tumors who received surgery at the neurosurgical department of the Istituto Scientifico San Raffaele in Milan between 1996 and 2016. “All surgical procedures were performed by the same experienced neurosurgeon, which is one of the most important factors affecting early and late surgical outcome of pituitary adenomas,” researchers explained. Among study participants, 22 (23.9%) had mutations in the USP8 gene, but these mutations were significantly more common in women than in men — 28.7% vs. 5.3%. Researchers think estrogens — a female sex hormone — may have a role in the development of mutated pituitary tumors. Overall, the two groups had similar tumor size and aggressiveness and similar ACTH and cortisol levels before surgery. But among those with microadenomas — tumors smaller then 10 mm in diameter — USP8-mutated patients had significantly larger tumor diameters. After receiving surgery, 81.5% of patients achieved surgical remission — deemed as low cortisol levels requiring glucocorticoid replacement therapy, normal cortisol levels in urine, and normal response to a dexamethasone-suppression test. But remission rates were significantly higher among those with USP8 mutations — 100% vs. 75.7%. Also, USP8 mutation carriers required steroid replacement therapy for shorter periods, despite ACTH and cortisol levels being similar among the two groups after surgery. Among patients who entered remission, 12 (16%) saw their disease return. While more patients with USP8 mutations experienced a recurrence — 22.7% vs. 13.2% — this difference was not significant. After five years, 73.8% of UPS8-mutated patients remained alive and recurrence-free, which researchers consider comparable to the 88.5% seen in patients without the mutation. Researchers also tested sex, age at surgery, and post-surgical ACTH and cortisol levels as possible predictors of disease recurrence, but none of these factors was associated with this outcome. “ACTH-secreting pituitary adenomas carrying somatic USP8 mutations are associated with a greater likelihood of surgical remission in patients operated on by a single neurosurgeon. Recurrence rates are not related with USP8-variant status,” researchers concluded. From https://cushingsdiseasenews.com/2018/10/23/cushings-disease-patients-usp8-mutations-more-likely-achieve-remission-after-surgery/
  3. A plasma adrenocorticotropic hormone suppression test performed shortly after surgical adenomectomy may accurately predict both short- and long-term remission of Cushing’s disease, according to research published in Pituitary. “Cushing’s disease is caused by hypersecretion of adrenocorticotropic hormone (ACTH) by a pituitary adenoma, resulting in hypercortisolism,” Erik Uvelius, MD, of the department of clinical sciences, Skåne University Hospital, Lund University, Sweden, and colleagues wrote in the study background. “Surgical adenomectomy is the first line of treatment. Postoperative remission is reported in 43% to 95% of cases depending on factors such as adenoma size, finding of pituitary adenoma on preoperative MRI and surgeons’ experience. However, there is no consensus on what laboratory assays and biochemical thresholds should be used in determining or predicting remission over time.” In the study, the researchers retrospectively gathered data from medical records of 28 patients who presented with Cushing’s disease to Skåne University Hospital between November 1998 and December 2011, undergoing 45 transsphenoidal adenomectomies. On postoperative days 2 and 3, oral betamethasone was administered (1 mg at 8 a.m., 0.5 mg at 2 p.m., and 0.5 mg at 8 p.m.). Researchers assessed plasma cortisol and plasma ACTH before betamethasone administration and again at 24 and 48 hours, and measured 24-urinary free cortisol on postoperative day 3. At 3 months postoperatively and then annually, plasma concentrations of morning cortisol and ACTH along with urinary-free cortisol and/or a low-dose dexamethasone suppression test were evaluated at the endocrinologists’ discretion. The researchers defined remission as lessening of clinical signs and symptoms of hypercortisolism, as well as laboratory confirmation through the various tests. The researchers used Youden’s index to establish the cutoff with the highest sensitivity and specificity in predicting remission over the short term (3 months) and long term (5 years or more). Clinical accuracy of the different tests was illustrated through the area under curve. The study population consisted of mainly women (71%), with a median age of 49.5 years. No significant disparities were seen in age, sex or surgical technique between patients who underwent a primary procedure and those who underwent reoperation. Two of the patients were diagnosed with pituitary carcinoma and 11 had a macroadenoma. ACTH positivity was identified in all adenomas and pathologists confirmed two cases of ACTH-producing carcinomas. Of the 28 patients, 12 (43%) demonstrated long-term remission at last follow-up. Three patients were not deemed in remission after primary surgery but were not considered eligible for additional surgical intervention, whereas 13 patients underwent 17 reoperations to address remaining disease or recurrence. Four patients demonstrated long-term remission after a second or third procedure, equaling 16 patients (57%) achieving long-term remission, according to the researchers. The researchers found that both short- and long-term remission were most effectively predicted through plasma cortisol after 24 and 48 hours with betamethasone. A short-term remission cutoff of 107 nmol/L was predicted with a sensitivity of 0.85, specificity of 0.94 and a positive predictive value of 0.96 and AUC of 0.92 (95% CI, 0.85-1). A long-term remission cutoff of 49 nmol/L was predicted with a sensitivity of 0.94, specificity of 0.93, positive predictive value of 0.88 and AUC of 0.98 (95% CI, 0.95-1). This cutoff was close to the suppression cutoff for the diagnosis of Cushing’s disease, 50 nmol/L. The cutoff of 25 nmol/L showed that the use of such a strict suppression cutoff would cause a low level of true positives and a higher occurrence of false negatives, according to the researchers. “A 48 h 2 mg/day betamethasone suppression test day 2 and 3 after transsphenoidal surgery of Cushing’s disease could safely predict short- and long-term remission with high accuracy,” the researchers wrote. “Plasma cortisol after 24 hours of suppression showed the best accuracy in predicting 5 years’ remission. Until consensus on remission criteria, it is still the endocrinologists’ combined assessment that defines remission.” – by Jennifer Byrne Disclosures: The authors report no relevant financial disclosures. From https://www.healio.com/endocrinology/neuroendocrinology/news/in-the-journals/%7B0fdfb7b0-e418-4b53-b59d-1ffa3f7b8cd3%7D/acth-test-after-adenomectomy-may-accurately-predict-cushings-disease-remission
  4. until
    Presented by Eliza Geer, MD Medical director, Multidisciplinary Pituitary & Skull Base Tumor Center Associate Attending, Endocrine Service Memorial Sloan Kettering Cancer Center After registering you will receive a confirmation email with details about joining the webinar. Contact us at webinar@pituitary.org with any questions or suggestions. Date: Wednesday, July 18, 2018 Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description: Learning Objectives: Review Cushing’s disease treatment guidelines Evaluate currently available medical therapies for Cushing’s disease Discuss new therapies in clinical trials Presenter Bio: Dr. Geer is an endocrinologist who specializes in caring for people with pituitary and neuroendocrine diseases. She is the Medical Director of Memorial Sloan Kettering’s Multidisciplinary Pituitary & Skull Base Tumor Center, located at Memorial Hospital in Manhattan. Their multidisciplinary pituitary team provides personalized surgical and medical treatment for people with pituitary and skull base tumors, including prolactinomas, growth-hormone secreting adenomas (acromegaly), and Cushing’s disease. Their overall goal is to improve and advance the care of people with these conditions. Dr. Geer’s research interests focus on achieving a better understanding of how and why pituitary tumors develop, and characterizing long-term outcomes in patients with Cushing’s disease. She has conducted a number of studies investigating body composition, adipose tissue regulation, and appetite in patients with Cushing’s disease, and she is involved in clinical trials investigating new medical therapies for patients with Cushing’s and acromegaly. Dr. Geer completed her internship and residency at the NewYork-Presbyterian Hospital/Columbia Medical Center. She was a fellow in endocrinology and metabolism at the Icahn School of Medicine/Mount Sinai Medical Center, after which she was a member of the faculty for ten years. She is currently an associate professor of medicine and an active member of the Endocrine Society, the Pituitary Society, the Pituitary Network Association and the American Association of Clinical Endocrinologists.
  5. Presented by Eliza Geer, MD Medical director, Multidisciplinary Pituitary & Skull Base Tumor Center Associate Attending, Endocrine Service Memorial Sloan Kettering Cancer Center After registering you will receive a confirmation email with details about joining the webinar. Contact us at webinar@pituitary.org with any questions or suggestions. Date: Wednesday, July 18, 2018 Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description: Learning Objectives: Review Cushing’s disease treatment guidelines Evaluate currently available medical therapies for Cushing’s disease Discuss new therapies in clinical trials Presenter Bio: Dr. Geer is an endocrinologist who specializes in caring for people with pituitary and neuroendocrine diseases. She is the Medical Director of Memorial Sloan Kettering’s Multidisciplinary Pituitary & Skull Base Tumor Center, located at Memorial Hospital in Manhattan. Their multidisciplinary pituitary team provides personalized surgical and medical treatment for people with pituitary and skull base tumors, including prolactinomas, growth-hormone secreting adenomas (acromegaly), and Cushing’s disease. Their overall goal is to improve and advance the care of people with these conditions. Dr. Geer’s research interests focus on achieving a better understanding of how and why pituitary tumors develop, and characterizing long-term outcomes in patients with Cushing’s disease. She has conducted a number of studies investigating body composition, adipose tissue regulation, and appetite in patients with Cushing’s disease, and she is involved in clinical trials investigating new medical therapies for patients with Cushing’s and acromegaly. Dr. Geer completed her internship and residency at the NewYork-Presbyterian Hospital/Columbia Medical Center. She was a fellow in endocrinology and metabolism at the Icahn School of Medicine/Mount Sinai Medical Center, after which she was a member of the faculty for ten years. She is currently an associate professor of medicine and an active member of the Endocrine Society, the Pituitary Society, the Pituitary Network Association and the American Association of Clinical Endocrinologists.
  6. MaryO

    In Memory ~ Sarah Fraik

    Sarah had recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease. She died on June 13, 2011 after a brief illness at the age of 28. Read more at https://cushingsbios.com/2013/09/14/sarah-fraik/
  7. until
    Presented By: Russell Lonser, MD, FAANS Professor and Chair Department of Neurological Surgery Ohio State University Wexner Medical Center After registering you will receive a confirmation email with details about joining the webinar. Contact us at webinar@pituitary.org with any questions or suggestions. Date: April 10, 2018 Time: 10:00 AM-11:00 AM Pacific Daylight Time, 1:00 PM - 2:00 PM Eastern Daylight Time Learning Objectives: To define clinical features of Cushing’s disease. To describe management paradigms for Cushing’s disease. To understand the evaluation of Cushing’s disease patients. Presenter Bio: Russell R. Lonser graduated with a B.A. in economics from Andrews University in 1990 and received his M.D. from Loma Linda University in 1994. He completed his neurosurgical training at the University of Utah in 2001. During his residency, he performed a 2-year research fellowship under the mentorship of Edward H. Oldfield, M.D., in the Surgical Neurology Branch at the National Institutes of Health (NIH). Upon completion of his residency, he joined the staff of the Surgical Neurology Branch at the NIH. He was Chief of the Surgical Neurology Branch at NIH before becoming Professor and Chair of the Department of Neurological Surgery at Ohio State University in 2012. He holds the Dardinger Family Chair in Neurosurgical Oncology. Dr. Lonser’s research interests include development of drug delivery paradigms for the central nervous system pathology, as well as investigation of tumor pathogenesis and biology. Specifically, his scientific efforts are directed toward studying convective delivery and neoplasia pathogenesis/propagation in familial tumor suppressor syndromes, including von Hippel-Lindau disease. His clinical and surgical interests are centered on the treatment of brain, temporal bone and spinal cord tumors. He is an author on over 300 scientific and clinical publications. He received the Tumor Young Investigator Award from the American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Tumors in 2001 and Mahaley Clinical Research Award from the American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Tumors in 2013. He was the 2017 American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Tumors Bittner Lecturer. He is a co-inventor on a patent for methods for convection-enhanced delivery of therapeutic agents. His contributions to organized neurosurgery include membership on the Executive Committee of the Congress of Neurological Surgeons. He was the Treasurer of the Congress of Neurological Surgeons and is President of the Congress of Neurological Surgeons. He also served on the Executive Committee for the American Association of Neurological Surgeons/Congress of Neurological Surgeons Section on Tumors. He has served on a number national committees for organizations involved in neurosurgical research. He is head of the Research Subcommittee in Head, Neck and Spine Injury Committee for the National Football League. He has been actively involved in the mentoring and training of over 40 neurosurgical fellows. He is on the Editorial Boards for NEUROSURGERY, World Neurosurgery and Journal of Neurosurgery. He is an Academic Editor for PLoS One and Science Reports. He is Consulting Editor for Neurosurgery Clinics of North America. Dr. Lonser is married to Carolyn. They have 3 daughters, Hannah (born 2001), Sarah (2004) and Alicia (2007).
  8. Erica was a fellow Cushing’s Disease survivor. She had been through pituitary surgery, radiation, and a BLA in an effort to receive her cure. Read more at https://cushingsbios.com/2015/03/11/in-memory-erica-michelle-gaga-meno/
  9. Hi Everyone! I am SO glad i found this website! I know in my heart that I have an endocrine disorder. I have recently switched to a whole new network of doctors hoping and praying this group will have help for me! So the past two years I had undergone an extreme amount of stress (loss of family member, parents divorcing, domestic abuse resolved, loss of child, loss of house, unexpected homelessness at 18, mother abandoning and relocating to another country after meeting a man online, mother having pulmonary embolism resulting with her and I finding out we both have multiple blood disorders etc etc etc) that coupled with starting a new birth control pill (which i heard raises cortisol levels). I am currently on zoloft only and have no alcohol, drug, or cigarette use ever. I am definitely MUCH better now having worked through this all in counseling/church finding great support!! But I thought I should give a back story of when it all started!! My symptoms: Rapid Weight Gain (95 lbs in one year with normal healthy diet) AND despite constant diet and exercising w/ trainer, haven't lost a POUND! DRY skin including terrible dandruff, red bumps on arms and legs, peeling skin on face with red cheeks but pimples on chin even with layers of moisturizers and lotions! Brittle nails and hair SO dry!! Unusual hair growth (not much YET but its still growing) - around jaw, neck, chest, and stomach. BAD stretch marks on stomach, arms, breast, chest, back, legs, knees, etc... To the point of looking like I was pregnant with triplets! They were dark purple, now turning white/yellow. Chronic Fatigue Chronic Muscle Pain everywhere worse in pelvic area, lower back, neck, shoulders. Short of breath but low blood pressure. Swelling of ankles and feet. Legs and arms skinny but belly and back huge! No buffalo hump on neck, though. Legs and arms frequently go numb. Constant nausea. Irregular bowel movements Frequent and urgent urination Depression/Anxiety (a lot more well managed now than before zoloft was having terrible panic attacks) Severe Hot Flashes And all of a sudden I'll get back and chest pain and have hot flashes but blood pressure still normal. Severe abdominal swelling with no cause, then goes back to normal in a few days. AND MORE! It's to the point where I had to quit my job and can't work thus leaving me unfortunately relying on fiance. I want to be my healthy self again! I was a model and competed in triathlons!! I have seen: Primary Care Neurologist Oncologist Hematologist Gynecologist/Obstetrician Cardiologist Nutritionist Personal Trainer Allergist Physical Therapist Rheumatologist Gastroenterologist None of them have been any help, trying every test in the book with everything negative. Had thyroid checked twice two years ago when all started and was normal. Also had CT scan, MRI, Xrays, POTS testing, Blood Tests, Urine Samples, Upper and Lower GI, Barium Swallow, Physical Endurance Testing, Etc etc etc etc I can't even remember the rest hahaha! And JUST TODAY my new OB/GYN suggested I try and see an endocrinologist... FINALLY! Someone who may know what she's talking about. I have NEW HOPE! Any advice or insight at all would be SO greatfully appreciated. THANK YOU SO MUCH!!!!
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