Monday, August 31, 2009

Saint John's Health Center Appoints Internationally Recognized Neurosurgeon

Former Chair of Neurological Surgery at University of Pittsburgh to Develop New Neuroscience Institute


SANTA MONICA, Calif., Aug 31, 2009 (BUSINESS WIRE) -- Saint John's Health Center today announced the appointment of world-renowned neurosurgeon Amin Kassam, MD, as Director of the new Saint John's Neuroscience Institute and faculty member of the John Wayne Cancer Institute at Saint John's. Dr. Kassam will lead the development of the new Neuroscience Institute which will offer an international minimally invasive neurosurgery center, as well as neuro-oncology, neuro-vascular surgery and other neuroscience services. The Institute will build on the foundation established over the last two years by Daniel F. Kelly, MD, Medical Director of the highly regarded Saint John's Brain Tumor Center.

Prior to his arrival at Saint John's, Dr. Kassam served as Chairman of the Department of Neurological Surgery, Professor of Neurological Surgery, and Director, Minimally Invasive endoNeurosurgery Center at the University of Pittsburgh Medical Center (UPMC). In this role, he directed one of the world's leading neurosurgical centers, consistently ranked as one of America's best neuroscience facilities by U.S. News & World Report.

Dr. Kassam joined the faculty of the University of Pittsburgh in 1997. During those 12 years, he held several positions and pioneered a number of novel procedures and techniques. He developed the multidisciplinary Minimally Invasive endoNeurosurgery Center which deals with the complex skull base pathology. Dr. Kassam also was a pioneer in the development of the Expanded Endonasal Approach which uses the nostrils as natural portals to remove brain and skull base tumors rather than using a traditional craniotomy (surgical opening through the top of the skull). He also was Director of the Center for Cranial Nerve Disorders at UPMC. During his tenure, physicians at the center performed more than 1,000 microvascular decompressions for disorders such as trigeminal neuralgia and hemifacial spasm.

"We are privileged to have someone of Dr. Kassam's unique and rare expertise join Saint John's," said Lou Lazatin, Chief Executive Officer of Saint John's and John Wayne Cancer Institute. "His appointment advances what Dr. Kelly founded at Saint John's. A Kelly and Kassam team will further our legacy of providing breakthrough medicine with inspired healing."

Dr. Kassam is the latest in a series of nationally recognized medical experts to join Saint John's from leading academic medical centers, going back to the relocation of the John Wayne Cancer Institute from UCLA in 1991. Saint John's began developing its neuroscience program with the arrival of Dr. Kelly from UCLA and establishment of the Saint John's Brain Tumor Center in 2007. The Brain Tumor Center provides comprehensive care, minimally invasive surgery and support for patients with brain tumors, skull base tumors and pituitary adenomas.

"I am blessed to have the opportunity to join Dr. Kelly, a true world authority and innovator in minimally invasive neurosurgery, and Saint John's Health Center, with a new state-of-the-art facility that is the future home of the Chan Soon-Shiong Center for Translational Sciences and an unwavering commitment to patient care," Dr. Kassam said. "I hope to be able to contribute to the foundation Dr. Kelly has established in Southern California and the history of groundbreaking research at the John Wayne Cancer Institute, such as the sentinel node research discovery that is now the world standard."

"It is an incredible opportunity to have Dr. Kassam join our team here at Saint John's," Dr. Kelly said. "We could not have asked for a more experienced, innovative and committed partner to advance and expand our ongoing efforts in minimally invasive neurosurgery, neuro-oncology and the neurosciences."

Dr. Kassam has performed more than 3,000 neurosurgical procedures including more than 1,000 minimally invasive endoscopic endonasal procedures with his team. He specializes in minimally invasive endoscopic brain tumor surgery, skull base and pituitary tumor surgery, vascular surgery, as well as trigeminal neuralgia and hemifacial spasm. His recent focus has been on the development of a surgical tube, called a "brain cannula," combined with detailed fiber tract mapping of the brain (tractography) to allow maximal and safe endoscopic removal of deeply situated brain tumors.

Dr. Kassam has written 128 peer-reviewed publications, authored 32 book chapters and delivered 119 national and international lectures. He has trained 11 clinical fellows, served as a visiting professor 28 times and taught 57 courses around the world. A board-certified neurosurgeon, Dr. Kassam received his medical and undergraduate education at the University of Toronto. He completed his residency and fellowship training at the University of Ottawa.

About Saint John's

Since its founding in 1942 by the Sisters of Charity of Leavenworth, Saint John's Health Center has been providing the patients and families of Santa Monica, West Los Angeles and ocean communities with breakthrough medicine and inspired healing. Saint John's provides a spectrum of treatment and diagnostic services with distinguished areas of excellence in cancer care, spine, orthopedics, women's health, cardiac care and specialized programs such as the internationally acclaimed John Wayne Cancer Institute. Saint John's is dedicated to bringing to the community the most innovative advances in medicine and technology. For more information, visit

Brain Tumor Center

The Saint John's Brain Tumor Center provides comprehensive care, minimally invasive surgery and support for patients with brain tumors, skull base tumors and pituitary adenomas. For more information, visit,

SOURCE: Saint John's Health Center

Saint John's Health Center 
Greg Harrison
858-472-5560 (cell)


Friday, August 28, 2009

For sure! RT @sandyboone: Great workshop on Photoshop CS4 - learning a lot.

Wednesday, August 26, 2009

Adrenocorticotropic hormone, cortisol values predicted recurrence of Cushing’s disease in children

Morning adrenocorticotropic hormone and cortisol values or an ovine corticotropin-releasing hormone test were better predictors of recurrence of Cushing’s disease in children following transsphenoidal surgery than low urinary free cortisol values, according to new data.

Researchers at the National Institutes of Health set out to identify which of three routine tests work best at identifying patients with Cushing’s disease who are not cured or for the prediction of relapse of the disease.

The study included 72 children aged 6 to 18 years who underwent transsphenoidal surgery. Following surgery, the researchers obtained plasma adrenocorticotropic hormone and serum cortisol, urinary free cortisol and an ovine corticotropin-releasing hormone stimulation test. Children were followed for two to 10 years.

Ninety-four percent of children with Cushing’s disease achieved sustained remission after transsphenoidal surgery. However, two children had persistent disease following surgery and four children appeared cured, but relapsed later — all four children had low or undetectable urinary free cortisol values that were the same as children with cured disease (P>.01).

When compared with children who relapsed, children who remained in remission had significantly lower morning adrenocorticotropic hormone and cortisol levels after transsphenoidal surgery (P<.001).

A subnormal adrenocorticotropic hormone level of <10.8 pg/ml was the best cutoff value for differentiating between remission and relapse, according to the researchers.

Fifty-seven percent of children who had a normal response to ovine corticotropin-releasing hormone experienced recurrence or disease relapse during the early postoperative period; no delayed relapse was observed among children who did not respond to administration following surgery.

Relapse was also associated with a lack of histological confirmation of an adenoma and glucocorticoid replacement for less than six months after surgery.

Batista DL. J Clin Endocrinol Metab.2009;94:2757-2765.



Tuesday, August 25, 2009

2 new and updated Cushing's bios added. dx include 1 adrenal, 1 pituitary

Something else?

I just got the mail results of last week's CT scan. No comments, just the hospital report. Naturally, this came after the doctor's office closed for the day so I have no one to talk to - just Google - and that's trouble!

The "good news" My multiple small pulmonary nodules are stable. They're in both lungs.

The bad, hopefully not too bad: "An anterior mediastinal lymph node has increased in size".

Google has all kinds of stuff from infection somewhere to sarcoidosis to SLE to to Bell's Palsy to lymphoma.

What infection? Could this be that tick bite coming back to haunt me?

From "The best test to determine whether a lymph node has lymphoma is a lymph node biopsy. A needle aspiration is an easier option but does not give the doctor all the details he may need for treatment. See the article on Lymph Node Biopsy."

Doesn't sound like fun :(

Keep telling yourself it's nothing. Stop worrying. I couldn't possibly have something else!

Cushing's locations page updated, 2 new people added.

Psoriasis Lotion Lessens Need for Prescription Steroid Creams

Shielding lotion, a new skin care breakthrough from Skin MD Natural offers hope for millions in U.S. suffering from Psoriasis

Beverly Hills, CA (PRWEB) 9/25/2009 -- Psoriasis is an incurable inflammatory disease of the immune system, which according to the National Psoriasis Foundation affects over 7.5 million Americans. The foundation also reports that currently 3.2 million people are undiagnosed. A dermatologist should be consulted to provide treatment options such as an over-the-counter psoriasis lotion in combination with prescription medications.

Dermatologists commonly prescribe topical steroid creams despite the number of negative side effects reported. The New Zealand Dermatological Society Incorporated has published that sufficient steroid absorbed through the skin may result in adrenal gland suppression and/or eventually Cushing's syndrome. The use of these creams has also been linked to causing a thinning of the skin, perioral dermatitis, enlarged blood vessels, and easy bruising of the skin.

The use of a shielding lotion can help reduce the amount of steroid cream needed to effectively treat a flare-up. Dr. Peter Helton, a board-certified dermatologist based in Newport Beach, CA says he prescribes a combination of steroids to handle the inflammation along with a moisturizing cream. Helton explains, "A shielding lotion like Skin MD Natural combines the medication with a sealant that keeps irritants out and helps the skin to heal. We get faster results and the patient uses less medication. Hands down, a shielding lotion works better than any conventional creams."

Key to improving the quality of life experienced by patients is a management and treatment plan that reduces symptoms coming with a lifetime of flare-ups. Symptoms of psoriasis include red or silver patches of scales, skin lesions, and dry cracked skin prone to itching, burning and bleeding. A shielding lotion such as Skin MD Natural locks in the skins own natural moisture reducing dry skin and other symptoms experienced.

Based on years of scientific research into how the skin works, Skin MD Natural shielding lotion differs from conventional psoriasis lotions by improving the skins own natural protection against the penetration of irritants. This outer layer is frequently stripped away by common household products, harsh soaps and antibacterial agents. Skin MD Natural becomes part of the outer layer of skin working to restore this natural function.

About Skin MD Natural & 21st Century Formulations

Beverly Hills, California based 21st Century Formulations is leading the way in dry skin care with the creation of their shielding lotion line, Skin MD Natural. Shielding lotions are a new concept in skin care that have been tested and proven to be unlike anything else on the market. The effectiveness of the skin lotion and the strength of the company's management commitment and product support, have resulted in it becoming one of the fastest growing internationally distributed product companies based in the United States.


6 new and updated Cushing's bios added. dx include 1 pituitary, 5 undiagnosed

Partial restoration of GH responsiveness to ghrelin in Cushing’s disease after 6 months of ketoconazole treatment: comparison with GHRP-6 and GHRH

Silvia Correa-Silva, Sergio Nascif, Patricia Molica, Larissa Sá, Jose Gilberto Vieira and Ana-Maria Lengyel

S Correa-Silva, Endocrinology, Universidade Federal de São Paulo, Sao Paulo, 04039-002, Brazil
S Nascif, Endocrinology, Universidade Federal de São Paulo, Sao Paulo, Brazil
P Molica, Endocrinology, Universidade Federal de São Paulo, Endocrinology, Sao Paulo, Brazil
L Sá, Endocrinology, Universidade Federal de São Paulo, Sao Paulo, Brazil
J Vieira, Instituto Fleury, Sao Paulo, Brazil
A Lengyel, Endocrinology, Universidade Federal de São Paulo, Sao Paulo, Brazil

Correspondence: Silvia Correa-Silva, Email:

Objective: In Cushing’s disease (CD), GH responsiveness to several stimuli including ghrelin, GHRP-6 and GHRH is blunted. Recovery of GH secretion after remission of hypercortisolism after transphenoidal surgery, radiotherapy or adrenalectomy is controversial. There are no studies evaluating the effect of primary clinical treatment with ketoconazole on GH secretion in CD. The aim of this study is to compare ghrelin-, GHRP-6- and GHRH-induced GH release before and after ketoconazole in CD.

Design: GH responses to ghrelin, GHRP-6 and GHRH of 8 untreated patients with CD (mean age:33.8 ± 3.1y; BMI:28.5 ± 0.8kg/m2) were evaluated before and after 3 and 6 months of ketoconazole treatment, and compared to 11 controls (32.1 ± 2.5; 25.0 ± 0.8).

Methods: Serum GH was measured by an immunofluorometric assay and urinary free cortisol by liquid chromatography and tandem mass spectrometry.

Results: After ketoconazole use, mean urinary free cortisol decreased significantly (before: 222.4 ± 35.0µg/24h; 3rd.month: 61.6 ± 10.1; 6th.month: 39.1 ± 10.9). Ghrelin-induced GH secretion increased significantly after 6 months (peak before:6.8 ± 2.3µg/L; 6th.month:16.0 ± 3.6), but remained lower than that of controls (54.1 ± 11.2). GH release after GHRP-6 increased, although not significantly, while GH responsiveness to GHRH was unchanged.

Conclusions: Ghrelin-induced GH release increases significantly after 6 months of ketoconazole treatment in CD. This could suggest that a decrease in cortisol levels during this time period can partially restore glucocorticoid-induced GH suppression in CD. GH-releasing mechanisms stimulated by ghrelin/GHS could be more sensitive, as no changes in GHRH-induced GH release were observed.



Cushing’s syndrome associated with a nested stromal epithelial tumor of the liver : hormonal, immunohistochemical and molecular studies.

Anne Rod, Manuela Voicu, Céline Bazille, Hervé Mittre, Estelle Louiset, Laurence Chiche and Yves Reznik

A Rod, Unité Fonctionnelle d’Endocrinologie et Maladies Métaboliques, CHU Côte de Nacre, Caen, France
M Voicu, Laboratoire de Génétique et de Biologie Moléculaire, CHR Clemenceau, Caen, France
C Bazille, Département d’Anatomopathologie, CHU Côte de Nacre, Caen, France
H Mittre, Laboratoire de Génétique et de Biologie Moléculaire, CHR Clemenceau, Caen, France
E Louiset, Laboratoire de Neuroendocrinologie Moléculaire et Cellulaire, INSERM, U-413, Université de Rouen, Mont Saint Aignan, France
L Chiche, Département de Chirurgie Digestive et Transplantation Hépatique, CHU Côte de Nacre, Caen, France
Y Reznik, Unité Fonctionnelle d’Endocrinologie et Maladies Métaboliques, CHU Côte de Nacre, Caen, France

Correspondence: Anne Rod, Email:


Context : Ectopic ACTH syndrome (EAS) is principally associated with aggressive malignant tumors but also with neuroendocrine tumors of good prognosis. Recently, rare nonhepatocytic nested stromal and epithelial tumors (NSET) were characterized by their possible association with Cushing’s syndrome, which biochemical and physiopathological features were still incompletely studied.

Objective : To describe the clinical and hormonal characteristics of an EAS originating from a liver NSET, and further understand the mechanism of cortisol overproduction.

Design and setting : This is a clinical case report from the Endocrinology department of Caen University Hospital, France.

Patient and Intervention : A 17-yr old female patient was found to have a large liver NSET with mild Cushingoid clinical features, intense biological hypercortisolism but moderate ACTH secretion. Resection of the tumor was curative with a 30-months follow-up.

Results : The epithelial component of the tumor coexpressed ACTH mildly, CRH strongly and 11?-hydroxysteroid dehydrogenase at a level comparable to normal human hepatocytes.

Conclusions : Liver NSET is a new cause of EAS which may evoke hypercortisolism by multiple biochemical pathways.


Cushing's locations page updated, 5 new people added.

Endocrine Disease




Among the hundreds of endocrine diseases (or endocrinological diseases) are:

  • Adrenal disorders:
    • Adrenal insufficiency
    • Addison's disease
    • Congenital adrenal hyperplasia (adrenogenital syndrome)
    • Mineralocorticoid deficiency
    • Conn's syndrome
    • Cushing's syndrome
    • adrenogenital syndrome
    • Pheochromocytoma
    • Adrenocortical carcinoma
    • GRA/Glucocorticoid remediable aldosteronism
    • Glucose homeostasis disorders:
    • Diabetes mellitus
    • Hypoglycemia
    • Idiopathic hypoglycemia
    • Insulinoma
  • Metabolic bone disease:
    • Osteoporosis
    • Osteitis deformans (Paget's disease of bone)
    • Rickets and osteomalacia
  • Pituitary gland disorders:
    • Diabetes insipidus
    • Hypopituitarism (or Panhypopituitarism)
    • Pituitary tumors
    • Pituitary adenomas
    • Prolactinoma (or Hyperprolactinemia)
    • Acromegaly, gigantism
    • Cushing's disease
  • Parathyroid gland disorders:
    • Primary hyperparathyroidism
    • Secondary hyperparathyroidism
    • Tertiary hyperparathyroidism
    • Hypoparathyroidism
    • Pseudohypoparathyroidism
  • Sex hormone disorders:
    • Disorders of sex development or intersex disorders
    • Hermaphroditism
    • Gonadal dysgenesis
    • Androgen insensitivity syndromes
    • Hypogonadism
    • Gonadotropin deficiency
    • Kallmann syndrome
    • Klinefelter syndrome
    • Ovarian failure
    • Testicular failure
    • Turner syndrome
    • Disorders of Gender
    • Gender identity disorder
    • Disorders of Puberty
    • Delayed puberty
    • Precocious puberty
    • Menstrual function or fertility disorders
    • Amenorrhea
    • Polycystic ovary syndrome
  • Thyroid disorders:
    • Goiter
    • Hyperthyroidism and Graves-Basedow disease
    • Hypothyroidism
    • Thyroiditis
    • Thyroid cancer
    • Tumours of the endocrine glands not mentioned elsewhere
    • Multiple endocrine neoplasia
    • MEN type 1
    • MEN type 2a
    • MEN type 2b
    • See also separate organs
    • Autoimmune polyendocrine syndromes
    • Incidentaloma - an unexpected finding on diagnostic imaging, often of endocrine glands


Monday, August 24, 2009

Cushing's: A young writer with much to say

Haley Walsh with the medal she won for her science project on Cushing’s disease.
Haley Walsh with the medal she won for her science project on Cushing's

By Beverly Beckham

Globe Columnist / August 23, 2009


Haley Walsh wants to be a writer. That’s her dream.

What she doesn’t realize is that she is a writer.

She has already penned a series of children’s books and published a newspaper. She keeps a journal, collects facts, and is always scribbling notes to herself. Plus, she says very writer-like things like, “In 30 years I want to remember every detail.’’ And, “It helps me to write out stuff.’’

Haley was writing even before she got sick. But it was her sickness that inspired her journal.

“My Adventure 12-27-06. Part 1. Starting.’’ That’s how it begins. She was just 8 when she was diagnosed with Cushing’s disease, a tumor on the pituitary gland, rare among adults but rarer still in children.

“The chance of a kid getting Cushing’s disease is one in a million,’’ the now very mature 10-year-old explained last week. She was sitting at her kitchen table in her Norton house, which she shares with her mom and dad, two sisters, three dogs, three frogs, one bird, one guinea pig, and a tadpole.

“The pituitary gland is located inside your head right behind your eyes,’’ she wrote in the “Learn About’’ section of the Ramsey News, a school newspaper she started last year when she was in fourth grade. “The pituitary gland is very tiny, only the size of a small grape! The tumor itself is only the size of a pea!’’

A pea-sized object that does a lot of damage.

Haley’s mother, Stacey, was the first to notice that the shape of her daughter’s face was changing and that she was suddenly putting on weight. It was the summer of 2006, and Haley, she said, “looked like a kid on steroids.’’ Stacey’s sister, a registered nurse, suspected Cushing’s disease. Haley’s pediatrician confirmed it. In March 2007, Haley had brain surgery.

There were months of tests prior to her operation. “This morning I started to cry because I am very tired of coming to Mass General so much! No offense to the very nice people who work at Mass General,’’ Haley wrote in her journal. “The doctors put me to sleep and they went in my leg, the very top of my leg, and went all the way up to my brain and took blood from around my pituitary gland and came down. Then they did the same thing up my other leg,’’ was another entry.

Her mother explained the operation: “The surgeon had to go up through her nose and drill a hole through her sinus wall to get to the pituitary.’’ When it was over and Haley was home and on the mend, this little girl actually wrote him a thank you note. Then she wrote and illustrated a tale about a superhero surgeon, whom she named after her doctor, Brooke Swearingin, and sent that to him, too.

This should be the end of the story. Tumor gone. Child well. And it was for a while.

“Part 13: All Done!’’ Haley wrote in her journal last August. “At the end of July on a Thursday I didn’t have to take any more pills. Yay! . . . I won my 3rd grade science fair on Cushing’s disease! 1st Place! I start soccer tomorrow and I start school on the 3rd.’’

But she was well for only a few months.

“In the fall I started to get suspicious,’’ her mother said. The symptoms were back. Weight gain. A moon-shaped face. Not sleeping through the night. Mood changes. “The pituitary gland controls everything.’’

The second time was harder. They knew what was coming. More tests. More surgery. Haley had her second brain operation on April 14. Last week, they learned that the tumor is still there.

“Cushing’s disease is rare in children. For it to reoccur once is even rarer. But twice?’’ Stacey sighed.

“I felt very scared in the beginning,’’ Haley said. And she may well be scared now, but if she is she’s not telling.

Her Froggy stories are her favorite tales, she said. Froggy is always saving the day. Her latest Froggy book is “Froggy saves the Cat Shelter.’’

“Where do you get your ideas?’’ I asked her, and, like every other writer who is asked this question, she grinned.

“Well, usually they just pop in my head,’’ she said.

She may have more surgery. Or radiation. Her next course of treatment is unclear.

What is crystal clear is that Haley Walsh is a writer with a lot to say.

Beverly Beckham can be reached at

© Copyright 2009 Globe Newspaper Company.



Saturday, August 22, 2009

@staticnrg The spam message is gone from my dashboard - maybe it's been marked ok?
@staticnrg I know - it's still marked as spam. I don't know when it will get released. :( Thanks for trying!

Friday, August 21, 2009

Maria Fleseriu, MD - Portland 09/02/09

Acromegaly Webinar Live From Portland

Wednesday, September 2, 2009 12:30-1:30pm (EST)


Two presentations:

Click here to attend the live presentation 15 minutes prior to the scheduled time

Featured Speaker: Maria Fleseriu, MD

Maria Fleseriu, MD graduated summa cum laude from the University of Medicine and Pharmacy of Timisoara, Romania and completed her residency training in internal medicine, as well as an endocrinology fellowship with a focus in pituitary disorders in Romania.

Subsequently, she completed an additional internal medicine residency at Case Western Reserve University in Cleveland, Ohio and an endocrinology fellowship at the Cleveland Clinic Foundation in Cleveland, Ohio.

Active in clinical research since the late 1980s, Dr. Fleseriu’s research interests include pathogenesis, diagnosis and therapy of pituitary tumors, and panhypopituitarism. Dr. Fleseriu has published extensively and has co-authored several book chapters detailing pituitary and thyroid pathology. She is board certified in internal medicine and endocrinology, is Assistant Professor of Endocrinology and Neurosurgery at Oregon Health & Science University, and serves as Director of OHSU Northwest Pituitary Center




Wednesday, August 19, 2009

Time to address the cancer again?

Last week I had my annual appointment with my kidney cancer surgeon.  He usually pats me on the arm and assures me he "got it all", no problem.

Every year he sends me for an abdominal CT.

This year I happened to have my CT early because of some suspicious pain.  So, he couldn't send me for that.

He decided it was time to address those lung nodules.  The first time I heard about them was in 2007 when a report said that my nodules hadn't grown much since the last scan.

Since then, every scan mentions them but no one has actually spoken about them.

Now, my doctor wants them scanned so off I go tomorrow.

I sure hope they're nothing more than nodules!

It's always something...

Frontiers in Radiosurgery

From OncoLog, July/August 2009, Vol. 54, No. 7/8

Printer-friendly version

Photo: Gamma Knife collimators

The Gamma Knife Perfexion’s eight automated sector drive motors allow for three sizes of gamma radiation beams, and the large collimator treatment volume facilitates treatment in such difficult locations as the upper cervical spine (left) and skull base (right). Photographs courtesy of Elekta, Inc.

Frontiers in Radiosurgery

By John LeBas

Multiple brain metastases, deep or enmeshed intracranial tumors, and tumors of the skull base and upper cervical spine can be difficult to treat, owing mainly to the delicate adjacent anatomy. Conventional therapies are sometimes too risky or of limited effectiveness.

Fortunately, patients with such lesions may benefit from stereotactic radiosurgery, which selectively targets tumor tissue to receive highly focused radiation with the help of computer-assisted treatment planning. At The University of Texas M. D. Anderson Cancer Center, the Division of Radiation Oncology in conjunction with the Departments of Neurosurgery and Head and Neck Surgery is now offering advanced stereotactic radiosurgery with the Leksell Gamma Knife Perfexion (Elekta, Stockholm, Sweden) system.

Like the earlier-generation stereotactic radiosurgery system it replaced, the Perfexion system integrates imaging and customizable dosing parameters to treat intracranial tumors with minimal damage to healthy tissue. However, the new device is fully automated and has improved treatment-planning capabilities, which will allow more efficient treatment of patients, treatment of more lesions per patient, and treatment of more anatomically complex locations than the earlier model.

With this technology, the multidisciplinary oncology team can create a radiation target that fits the lesion almost perfectly. Using a computer that displays images of the target in multiple planes, the physicians direct a cursor to “drop shots,” or place ray paths, around the tumor. From this interaction, the software computes a three-dimensional field that can be finely adjusted for size, dose, and position. After the treatment plan is finalized, the patient is secured into the treatment machine, and a customized dose of radiation is delivered according to the exact specifications of the field created by the team.

Precise targeting

The primary appeal and clinical importance of the Gamma Knife lie in its precision and ability to safely reach deep tumors; its treatment efficiency is potentially very high. While surgery is the most common treatment approach for tumors in and around the skull, surgery is not feasible in all cases. “Some tumors aren’t optimally treated with surgery, some need radiation therapy after surgery, and some cannot be treated with chemotherapy,” said Franco DeMonte, M.D., professor and medical director of M. D. Anderson’s Brain and Spine Center. “For those tumors, the Gamma Knife may be a good option.” Surgeons at M. D. Anderson partner closely with their radiation oncology colleagues when treating patients with the Gamma Knife.

Photo: Drs. Eric L. Chang and Franco DeMonte

Dr. Eric L. Chang (front) and Dr. Franco DeMonte create a customized stereotactic radiosurgery treatment plan using the Gamma Knife Perfexion system.

The precision of the Gamma Knife results from a combination of attributes. The treatment plan is created using high-resolution maps based on magnetic resonance imaging (MRI) and computed tomography (CT) scans. The patient’s head is secured in a frame to create a stereotactic targeting space. And the gamma radiation beams are shaped by channels as small as 4 mm, allowing tumors of various shapes and sizes to be effectively treated with minimal danger to surrounding healthy tissue.

The Gamma Knife directs multiple beams of gamma radiation at individual doses that are considered clinically insignificant. However, the sum of those small doses as they intersect at the target is clinically significant. As the physician drops shots and adjusts the eight sector collimators during planning, the computer calculates the exact amount of radiation that will be built up at each point within the target. The approach spares healthy tissues that lie in the paths of the beams while allowing a tumor-killing level of radiation to be delivered within a well-defined area.

In addition to the 4-mm size, the Gamma Knife’s tungsten collimators offer 8-mm and 16-mm shots emitted by 192 cobalt-60 sources in the machine. The machine uses four pins to hold the skull in position; the slightest movement could mean the difference between hitting or missing the tumor, and a miss could deliver damaging radiation to healthy tissues instead. “It’s a one-shot deal. There’s only one chance to get it right since you can’t take back the treatment once you give it,” said Eric L. Chang, M.D., associate professor and director of M. D. Anderson’s central nervous system stereotactic radiosurgery program. “That’s why the delivery needs to be robust and highly precise.”

Because the Gamma Knife can so precisely treat small lesions without damaging normal brain tissue, the device is ideally suited for the treatment of patients with multiple brain metastases. Frequently, patients with brain metastases have already received whole-brain irradiation, and further whole-brain irradiation may carry an increased risk of toxicity. Gamma Knife radiosurgery, however, can obviate the need for repeating whole-brain irradiation, and some patients may be able to avoid whole-brain irradiation altogether by receiving Gamma Knife radiosurgery as initial therapy.

At M. D. Anderson, patients with difficult tumors in and around the skull are evaluated in a multidisciplinary fashion. “A multidisciplinary approach is essential to ensure that we choose the best treatment modality and produce the best possible plan for each patient,” Dr. Chang said. That approach carries into treatment planning for Gamma Knife sessions, involving specialists in radiation oncology, neurosurgery, head and neck surgery, and radiation physics.

Improved technology

The Gamma Knife Perfexion system, available for about 3 years, has been tested in controlled studies at other institutions. Experience from those studies suggests its treatment potential is greater than that of the earlier radiosurgery system. “The earlier system, which was 10 years old, was not fully automated. As a result, it was just not efficient to use it to treat more than four lesions per patient at a time,” said Almon S. Shiu, Ph.D., professor and supervising radiation physicist. “We believe the new system is the most automated radiation therapy system available, which will allow us to target a greater number of lesions.”

The new machine automatically positions the radiation sources at the correct collimator channels; in the old device, the channels had to be manually configured to customize the gamma rays’ path for each patient. With the automated system, Dr. Chang said, multiple targets in the brain can be treated more efficiently.

Alt: Imaging studies and dosing fields

The Gamma Knife system integrates imaging studies and computer-calculated dosing fields (seen as circles) to allow precise targeting of tumors.

The automation and configuration of the Gamma Knife will also allow the treatment of different types of lesions, including acoustic neuromas, meningiomas, pituitary tumors, and other benign brain tumors; skull base tumors; malignant gliomas; and possibly tumors in the upper cervical spine. On the opening days in the Gamma Knife suite, specialists successfully treated two skull base tumor patients—one with a recurrent nasopharynx carcinoma and one with a recurrent salivary gland cancer in the skull base—who previously would not have been candidates for radiosurgery because the earlier-generation machine could not reach the skull base.

The integration of CT and MRI studies, which are essential to developing the treatment plan, has also been improved with the Perfexion system. The previous version of treatment planning software did not allow the treatment plan to be worked up until the day of the treatment, after the patient was secured in the frame. The new planning software does allow the flexibility of preplanning, which could improve operational efficiency—important since about 300 patients are treated each year, and the number is expected to grow.

Increasing options

The advances in the technology translate primarily into a wider range of treatment options for patients with brain, skull base, and upper cervical spine tumors. “We wanted to be able to offer all modalities to the patient and improve continuity of care,” Dr. DeMonte said. “It is important to offer choices in treatment, and for many patients, the risk-benefit ratio and preferences will support one choice or another. For example, an elderly patient with a skull base tumor may not be a candidate for surgery, but that patient may be successfully treated with the Gamma Knife.”

Paul Gidley, M.D., an associate professor in the Department of Head and Neck Surgery who specializes in the treatment of acoustic neuromas, said similar choices will apply to some patients he sees. “The same complications—namely, facial weakness or paralysis and hearing loss—can occur whether we treat acoustic neuromas with surgery or radiation therapy,” he said. “However, for patients who are infirm or have other medical problems and thus cannot tolerate surgery, Gamma Knife may be an excellent choice.” More specifically, Gamma Knife radiosurgery is an option for medium-sized (2.5 cm) and smaller acoustic neuromas or those that have regrown after surgery.

The advantages for patients with brain metastases are important when considering that such cases are increasing in both complexity and number. “We started out using radiosurgery for treating patients with single brain metastases, but treatments have evolved to the point where we are now routinely treating newly diagnosed brain metastasis in patients with up to three or four tumors,” Dr. Chang said. “Cancer patients in general are surviving longer as more effective systemic treatments become available, but as survival increases, patients are also developing more brain metastases. To help those patients over the long term, we need to safely and efficiently treat brain metastases when they appear while preserving neurocognitive function and minimizing any damage to the brain. Radiosurgery is also chemo-friendly, allowing patients to return to their chemotherapy program with minimal delay.”

For more information, visit the Brain and Spine Center at, or contact Cindy Kizer, R.N., at 713-563-2405.



Tuesday, August 18, 2009

Diminished and irregular thyrotropin secretion with delayed acrophase in patients with Cushing’s syndrome

F Roelfsema, A Pereira, N Biermasz, Marijke Frölich, Daniel Keenan, Johannes Veldhuis and J Romijn

F Roelfsema, Endocrinology and Metabolism, Leiden University Medical Center, Leiden, 2333ZA, Netherlands
A Pereira, Endocrinology and Metabolism, Leiden University Medical Center, Leiden, Netherlands
N Biermasz, Endocrinology and Metabolism, Leiden University Medical Center, Leiden, Netherlands
M Frölich, Endocrinology and Metabolism, Leiden University Medical Center, Leiden, Netherlands
D Keenan, Statistics, University of Virginia, Charlottesville, United States
J Veldhuis, Endocrine Research Unit, Mayo Clinic, Rochester, United States
J Romijn, Department of Endocrinology, C4-R, Leiden University Medical Center, Leiden, 2300 RC, Netherlands

Correspondence: F Roelfsema, Email:


Context. The hypothalamo-pituitary-thyroid axis in Cushing’ syndrome may be altered.

Objective. We analyzed serum TSH profiles in relation to cortisol profiles in patients with hypercortisolism of pituitary (n=16) or primary-adrenal origin (n=11) and after remission by pituitary surgery (n=7) in order to delineate aberrations in the hypothalamo-pituitary-thyroid system.

Intervention. Patients and controls (n=27) underwent a 24-h blood sampling study. Serum TSH and cortisol were measured with precise methods and data were analyzed with a deconvolution program, approximate entropy (ApEn) and cosinor regression.

Results. Pulsatile TSH secretion, and mean TSH pulse mass, were diminished during hypercortisolism, independently of etiology (P<0.001). TSH secretion was increased in patients in remission only during day-time due to increased basal secretion (P<0.01). Pulse frequency and half life of TSH were similar in patients and controls. TSH ApEn (irregularity) was increased in patients with hypercortisolism (P<0.01), but was normal in cured patients. Cross-ApEn between TSH and cortisol, a measure of pattern-synchrony loss, was increased in active disease, indicating (partial) loss of secretory synchrony. The TSH rhythm was phase-delayed in hypercortisolemic patients, but normal in cured patients (P<0.01). Free thyroxine levels were decreased only in pituitary-dependent hypercortisolism compared with controls (P=0.003). Total 24-h TSH correlated negatively and linearly with log-transformed cortisol secretion (R=0.43, P=0.001).

Conclusion: Cortisol excess decreases TSH secretion by diminishing pulsatile release, whereas surgically cured patients have elevated non-pulsatile TSH release. Diminished TSH secretory regularity in active disease suggests glucocorticoid-induced dysregulation of TRH or somatostatinergic / annexin-1 control.


Monday, August 17, 2009

Growth hormone replacement in adults: interactions with other pituitary hormone deficiencies and replacement therapies

Helena Filipsson and Gudmundur Johannsson

H Filipsson, Endocrinology, Göteborg, Sweden
G Johannsson, Endocrinology, Medicin, Gothenburg, SE-413 45, Sweden

Correspondence: Gudmundur Johannsson, Email:

Severe growth hormone deficiency (GHD) in adults has been described as a clinical entity. Some of the features associated with GHD could, however, be due to unphysiological and inadequate replacement of other pituitary hormone deficiencies. This may be true for glucocorticoid replacement that lacks a biomarker making dose titration and monitoring difficult.

Moreover, oral oestrogen replacement therapy decreases insulin growth factor 1 (IGF-I) levels compared to transdermal route, which attenuates the responsiveness to GH replacement therapy in women. In addition, in untreated female hypogonadism, oral oestrogen may augment the features associated with GHD in adult women. Important interactions between the hormones used for replacing pituitary hormone deficiency occur. Introducing GH replacement may unmask both an incipient adrenal insufficiency and central hypothyroidism.

Therefore, awareness and proper monitoring of these hormonal interactions are important in order to reach an optimal replacement therapy. This review will focus on the complex hormonal interactions between GH and other pituitary hormones in GHD and in GH replacement.


From isolated growth hormone deficiency to multiple pituitary hormone deficiency: an evolving continuum. A KIMS analysis

Marianne Klose, Bjorn Jonsson, Roger Abs, Vera Popovic, Maria Koltowska-Haggstrom, Bernhard Saller, Ulla Feldt-Rasmussen and Ione Kourides

M Klose, Endocrinology, Rigshospitalet, Copenhagen, 2100, Denmark
B Jonsson, Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden
R Abs, Endocrinology, University of Antwerp, Wilrijk, Belgium
V Popovic, Neuroendocrine Unit, Endocrinology, Belgrade, Serbia
M Koltowska-Haggstrom, KIGS/KIMS/ACROSTUDY Medical Outcomes, Pfizer Endocrine Care, Sollentuna, Sweden
B Saller, Endocrine Care, Pfizer Ltd., Tadworth, United Kingdom
U Feldt-Rasmussen, Dept of Endocrinology P, Rigshospitalet, Copenhagen, Denmark
I Kourides, 7Global Endocrine Care, Pfizer Inc, New York, United States

Correspondence: Marianne Klose, Email:

Objective: To describe baseline clinical presentation, treatment effects, and evolution of isolated growth hormone deficiency (iGHD) to multiple pituitary hormone deficiency (MPHD) in adult-onset (AO) GHD.

Design: Observational prospective study.

Methods: Baseline characteristics were recorded in 4110 patients with organic AO-GHD, who were GH naïve prior to entry into KIMS (Pfizer International Metabolic Database)(283 (7%) iGHD, 3827 MPHD). The effect of GH replacement after two years was assessed in those with available follow-up data (133 iGHD, 2207 MPHD), and development of new deficiencies in those with available data on concomitant medication (165 iGHD, 3006 MPHD).

Results: iGHD and MPHD patients had similar baseline clinical presentation, and both groups responded similarly to 2 years of GH therapy, with favourable changes in lipid profile and improved QoL.

New deficiencies were observed in 35% of iGHD patients, which was similar to MPHD patients with one additional deficit other than GH. New deficiencies most often presented within the first year but were observed up to 6 years after GH commencement. Conversion of iGHD into MPHD was not predicted by etiology, baseline characteristics, surgery or radiotherapy, whereas in MPHD additional deficits was predicted by age (p<0.001) and pituitary disease duration (p<0.003).

Conclusion: Both AO-iGHD and -MPHD patients have similar baseline clinical presentation and respond equally well to 2 yrs of GH replacement. Hypopituitarism in adults seems to be a dynamic condition where new deficiencies can appear years from the initial diagnosis, and careful endocrine follow-up of all hypopituitary patients, including those with iGHD, is warranted.


Sunday, August 16, 2009

Thanks! RT @staticnrg: Have you found website? Also, message/support boards?

Saturday, August 15, 2009

@llama3234 You're very welcome :)
3 new Cushing's bios added. dx include 1 pituitary, 2 undiagnosed
Cushing's locations page updated, 3 new people added.
Not staticnrg but... Great Minds Think Alike RT @llama3234: @staticnrg meant to ask what does gmta mean? Lol

Friday, August 14, 2009

Why my house is a mess, part 2

I don't think that the stimulating music would be enough to get me moving.  My post-Cushie slugdom needs a bit more than that.

Oh well - not much new here.

Part 1 is here.



When facing inertia toward doing boring jobs, a variety of solutions is possible. Several, but not all, are geared to stimulating the adrenaline level
so you will be more interested in doing what needs to be done, boring or not.

• Put on stimulating music: polkas, marches, rock, whatever happy music gets your blood (and adrenaline) flowing. Knowing there is an end to the music also
encourages you.

• Make a commitment with a time limit to somebody.  The pressure will stimulate your spirits. Some people call a friend or place a fifteen minute challenge on
the internet. After fifteen minutes or so, they get back in touch either by phone or email and report how they have done.

• Change your thinking. Tell yourself that although this part of the job is boring, it is a part of a larger and exciting project. Perhaps the CD, Create Your Dream and Live It, created by Sandra Felton will help you transform your thinking. Find it at\deo/create_your_dream_and_live_it_1/

• Give yourself a reward when you finish the job.  Make a special long distance call, take a friend to lunch, buy a body splash or piece of costume jewelry or whatever makes you happy.

• Attach your boring job to something interesting. Listen to a taped story you enjoy. Listen only when you are doing your filing, cleaning the kitchen,
or whatever. You will be glad to get back to it the next day to see what happens.

• Set up an automatic routine that includes the boring job. Habit takes over and gives a boost.  In this approach, the less emotionally involved you are, the better.

• Finally, if possible, consider getting someone else to do the job: a cleaning lady, a hired teenager, or a family member. You may have better contributions to make to the family. Or you may just find that when you work along side someone else, the job is much easier.

Thursday, August 13, 2009

Tough economic choices force patients to reconsider chronic disease care

Hard economic choices mean that many patients with chronic diseases, such as diabetes, are considering alternatives that may be risky to their health — skipping medications, splitting pills, ignoring refills and postponing office visits.

Endocrine Today interviewed several health care providers about how they and their patients are coping with chronic disease management in the current economic environment.

“I have previously experienced downturns in the economy, but nothing like this,” John A. Seibel, MD, director of the New Mexico Endocrine Center in Albuquerque, N.M., said in an interview.

“This is especially serious for patients with diabetes because they tend to be on multiple medications, and many have an average monthly medication bill close to $500,” he said. “Some patients have told me that they will run out of their medications in the next month or so and will not be able to refill their prescriptions.”

A recent Harris Interactive/HealthDay poll found that 56% of adults aged 45 to 65 are “very–to–extremely” worried about having to pay more for their health care or health insurance. Survey results also revealed that 28% of participants had a medical problem but did not visit a doctor; 22% did not fill a prescription.

John A. Seibel, MD
John A. Seibel, MD, said that patients “have told me that they will run out of their medications in the next month.”

Photo by: Bryan’s Photography

With more than 600,000 U.S. adults losing their jobs each month, Seibel said he has at least two patients per day who tell him that they or their spouse have lost their job.

“There are so many layoffs and economic issues that health care takes a back seat,” Donna Rice, RN, CDE, president of the Diabetes Health and Wellness Institute, Baylor Health Care System, told Endocrine Today. “In fact, a patient just emailed me and asked if I could help them save their home.”

Cutting back on medications, visits

According to the American Diabetes Association, the estimated cost for diabetes was $174 billion in 2007, and the estimated medical cost was $116 billion. The ADA also estimated that the monthly cost to treat diabetes ranges from $350 to $900 for patients who do not have insurance, and emergency care and short-term hospitalization can cost $10,000 or more.

“Without insurance — or even with it — patients may need to cut back on some of their medications,” Seibel said. “For some, this will mean sacrificing good control of their illnesses.”

One method of “cutting back” has included switching to generic medications. Although the most prudent route may be to switch to as many generic medications as possible, this can sometimes mean less control of disease.

“Patients are more likely to bounce around by using generics with medications that have a narrow therapeutic range, such as thyroid replacement therapy. Some have switched from brand name statins that give better control to generics that require much larger doses to come close to good control. Some patients with diabetes have had to stop analogue insulin and switch to older insulin, again possibly sacrificing good control,” Seibel said.

Richard Dolinar, MD
Richard Dolinar

In some cases, patients have stopped taking medications altogether “just to get by”.

“Ironically, at times, it seems as though my patients are demanding a cheaper disease,” said Richard Dolinar, MD, an Endocrine Today Editorial Board member.

“One thing to keep at the forefront is that the actual cost of skimping on medications may not be evident right away, but down the road this is setting patients up for the complications of diabetes,” said Dolinar, senior fellow in health care policy at Heartland Institute in Chicago and clinical endocrinologist in private practice in Phoenix. “Patients get a false sense of economizing, but they will actually lose dollars down the road.”

Some patients take other extreme measures to deal with their health care needs. Seibel said a patient ended up visiting the emergency department because he ran out of insulin and could not pay for it. In May of this year, a man attempted to rob a convenience store in Fort Smith, Ark., because he needed the money for insulin; the store clerk gave the robber $40 from his own wallet, according to news reports.

Fast Facts

“We are seeing more ‘no shows’ in the office and cancellations because they cannot afford the office co-pay,” Seibel said. “In talking to other physicians, they are all seeing the same things.”

Rice added, “Diabetes educators have noticed a decline in patient visits, especially in states where the economic decline is in crisis, such as Michigan. Although office visits with the physician may be decreased, patients can still keep up with their physician via email or phone.”

Donna Rice, RN, CDE
Donna Rice

One way to combat this problem is evaluate whether office visits can be scheduled less frequently; for example, one visit every four months instead of every three months, or one every six months instead of every four months.

UCLA cardiologists have also noticed the effect of the economy on patients with heart disease, as increased stress, poor eating and forgoing activities such as going to the gym when money is scarce can take a toll on the heart. They suggested not cutting back on health care because efforts to reduce costs may worsen a patient’s health “down the road.” Studies show that patients who stop their cardiovascular medications are at much higher risk for myocardial infarction, stroke, heart failure and reduced survival compared with patients who adhere to their medical regimen.

“We’ve seen an increase in patients complaining about heart palpitations, anxiety and stress over the past months,” Karol Watson, MD, associate professor of cardiology at the David Geffen School of Medicine at UCLA, said in a press release in January. “Much of heart disease can be prevented, that’s why it is so important to follow a healthy lifestyle and to control CV risk factors.”

A sedentary lifestyle and poor diet have been associated with an increased risk for chronic diseases such as diabetes, stroke or MI. According to a recent study published in the Journal of the American Medical Association, “Obesity-attributable costs account for 5% to 7% of annual health care expenditures — currently amounting to more than $100 billion per year.”

Counseling patients

Patients should continue regular contact with their health care provider and check into alternatives, Dolinar suggested.

“Some illnesses such as diabetes and hypertension can be helped to some extent by environmental factors,” Seibel said. “Patients need to become more active and start physical activity and nutritional programs to help control their illness; this could result in cutting down the amount of medications they use.”

Experts recommend continued regular exercise. For those who cannot afford a gym membership, inexpensive options include walking in the neighborhood or swimming at the local pool. The most current recommendations by the U.S. Department of Health and Human Services suggest 30 to 60 minutes of daily exercise.

Twila Brase, RN
Twila Brase

Twila Brase, RN, public health nurse and president of the Citizen’s Council on Healthcare, said uninsured patients with chronic diseases seem “more in tune with taking care of themselves, outside the doctor’s office as well as in the doctor’s office.”

“They pay cash, they negotiate for cheaper prices, they ask questions about how much everything will cost and then make the decision with their doctor as to exactly what they are willing to pay,” Brase said.

Rice said providers need to do “whatever it will take.” She suggested contact with diabetes educators via phone or email because it is free, joining support groups for guidance, going to free or “ability–to–pay clinics,” utilizing blood pressure screenings at local libraries and emailing blood glucose levels to providers in lieu of an office visit.

Pharmaceutical companies are now assisting individuals with programs that offer free or low-cost medications for a set period of time. PhRMA offers a number of programs through the Partnership for Prescription Assistance (; AstraZeneca has the AZ&Me Prescription Savings Program (; and Eli Lilly has the Lilly Cares and Lilly Answers programs (

Chart: Actions Taken in Past 12 Months Because of Cost

In May, Pfizer launched MAINTAIN (Medicines Assistance for Those who Are in Need) to help eligible unemployed Americans and their families who have lost their health insurance maintain access to their Pfizer medicines for free for up to one year (

However, with all programs, patients must meet certain qualifications to participate. Some people may make too much money to qualify for help but do not have enough funds to afford the medications on their own.

“There are programs out there that the pharmaceutical industry runs that will be of some help to many, but they cannot help all,” Seibel said.

“We need to know what the resources are and how to direct people,” Rice said. “Right now, the population that is in the most trouble is aged younger than 65.”

Experts offer several recommendations for hard-pressed patients and providers, such as exploring all options for covering the cost of diabetes supplies and pumps. Other suggestions include:

  • Consider generic and/or combination drugs for patients on more than one medication.
  • Check with the local and state government for medication and diabetes supplies prescription assistance.
  • Buy test strips and syringes in bulk to save money.
  • Look for generic brand meters and supplies.
  • Research ordering supplies though the mail — many insurance plans will charge a lower co-pay.
  • Compare the cost of other insulin delivery systems, like insulin pens vs. vials.
  • Participate in research trials as source of health care.

“Patients and physicians need to look for these resources and be savvy,” Rice said. “We need to be prepared for the patient who cannot pay, and I think everyone needs to do a certain amount of charity work.” – by Jennifer Southall

How can providers help hard-pressed patients?

For more information:



Why my house is a mess!

I always knew it wasn't my fault (entirely!)

From an email from The Organizer Lady:


What's the matter with me? Am I just lazy? That is the question many women ask themselves as they see their friends who are quick to clean the cabinets, fold the laundry, wash the dishes, file the papers, or whatever dreaded mundane task they procrastinate doing.

The answer may lie in research which shows that some who dread these type of jobs have bodies that are low in adrenaline. These people can focus and accomplish jobs they find exciting or interesting so they often say they can do what they are interested in. But if they are not interested, the jobs go undone. This is because excitement stimulates the production of adrenaline and, voila, they suddenly feel like doing the job. Sometimes they lose interest before the job is completely done, the adrenaline drops, and the stuff sits around the house half done. Cleaning up after the job is completed is definitely boring. No fun in that! So the ebb and flow of interest regulates whether the job gets done. And the house shows the effect of it.

(Tomorrow - What to do about it.)

I wonder if tomorrow will tell me to up my Cortef to get a cleaner house.

Sunday, August 9, 2009

Now I know what it feels like to have a gun held to my own head: Ameera MacIntyre's battle with a brain tumour

Some husbands come home moaning that the boss doesn't appreciate them or that the train to work was delayed again. My husband Donal returns complaining about a crack dealer who pinned him to the floor, drilled a pistol into his temple and threatened to blow his brains out.

And now I know what it feels like to have a gun held to my own head.

I'm only 34, I work out, I don't smoke and I drink only socially. I normally enjoy excellent health. But suddenly, three years ago, I found myself waking up every day with what felt like a bad hangover.

Ameera with husband Donal MacIntyre

Rolling with the punches: Ameera with husband Donal MacIntyre

As each day progressed, the feeling of grogginess and a dull headache would coalesce into a mind-splitting migraine. Sometimes I would be violently sick.

Perhaps most frightening was the effect on my vision. I felt as if there were daggers behind my eyes. My eyesight seemed to be deteriorating rapidly and I was struggling to focus. By the end of each day I was exhausted.

Donal was working flat-out on various TV programmes at the time and I was struggling to look after our three-year-old daughter, Allegra, on my own. I went to see my GP. 'Most likely a hormone imbalance,' he announced airily, after examining me.

'Your periods are irregular and I would suggest that stress is the most likely explanation.' He sent me for blood tests, to reassure me, and he said that if the headaches got any worse I should try paracetamol.

Oh, and he suggested that I take some exercise. Well, we could all do with more of that but in my bones I knew that that wasn't the cause of the problem. Nor, I suspected, was stress.

Sharing my life with someone whose job involves mixing with violent criminals meant I did know a little something about stress. After all, Donal has moved house 50 times in the past decade to avoid the attentions of the criminals he specialises in exposing.

We have moved seven times since we married just three years ago.

I had also put on about 12lb. For someone whose weight had never changed in ten years, metamorphosing from a size six to a size ten in such a short period of time was profoundly worrying.

Living with danger: Ameera and Donal have made efforts to spend more time together, along with daughters Tiger and Allegra, since her diagnosis

Living with danger: Ameera and Donal have made efforts to spend more time together, along with daughters Tiger and Allegra, since her diagnosis

Then, even though it was nearly three-and-a-half years since I had given birth to Allegra, I started to lactate. My breasts just started leaking. It was difficult to go out without a change of bra or top because I could never tell when or where my breasts would discharge milk. It was uncomfortable and embarrassing.

My sister, Fareeda, is a consultant oncologist in Newcastle. Her first thought, when I described my symptoms, was that it could be a pituitary tumour.

Is there anyone who doesn't find the word 'tumour' terrifying? I knew that a tumour on the brain could be fatal. I was frightened for myself and for my family.

I contacted a consultant neurologist who set up an MRI scan without hesitation. Magnetic resonance imaging (MRI) works by taking a series of magnetic images of the brain and building them up into a 3-D picture.

Submitting to the scan is not a particularly enjoyable process for anyone, but is especially unpleasant for those who suffer from claustrophobia, as I do. It felt like being enclosed in a sterile white coffin. It took three attempts before I was able to stay in the machine for the required 20 minutes.

The radiologist entrusted me with the scan films and his report, in a large sealed envelope addressed to the neurologist. I opened it in the hospital waiting room, which I knew I wasn't supposed to do.

I felt the blood draining from my face as I read the words 'pituitary adenoma'. Despite the advance warning from my sister, I was still unprepared. It was one of those moments when a strange stillness descends. I knew nothing would ever be the same again.

I didn't tell Donal immediately because I didn't want to add to his stress levels. But once he knew his reaction was to scan the internet for any information on the condition. I had done the same, but the more I found out, the more the knowledge weighed me down. It didn't help that my father had died recently, leaving me feeling more vulnerable than ever.

Three days after the MRI, the neurologist slotted the scans on to the light box and explained what they showed. Our family's future, it seemed, now depended on a tiny nodule - an 'abnormality' - on my pituitary gland.

The bad news was that, yes, I had a tumour, but the good news was that it was small, treatable and manageable. The prognosis was very positive, although the threat will never go away. The neurologist compared it to having a loaded gun pointed at my head. That gun will always be present but drugs can hold the trigger in check.

Despite the neurologist's sugaring of the pill, I was literally shaking as Donal and I sat in his office. I was petrified. A tumour alert is less a diagnosis than an event - it is the end of one way of living and the beginning of a new lifestyle.

The first thing I did was return to my GP, who prescribed a short course of antidepressants to help me get through the day without being dragged down.

While I was dealing with my health issues, Donal was working for channel Five on a number of projects that required him, as ever, to spend a lot of time away from home. I wanted him around and he wanted to give up work and stay at home but, on the other hand, he had to earn a living and life has to go on.

'Don't imagine this means you can pack in the job and laze around the house watching sport,' I told him. We both knew I was trying to make light of something we were going to have to live with for a long time.

But I wasn't in despair. Donal's great friend and canoeing partner, Alexis Gohar, had lived with a pituitary gland tumour for a decade. His condition was chronic and much more severe than mine but his experience and encouragement gave us a great deal of hope.

Alexis had been a guinea pig for radical treatment at the Endocrine Unit at St George's Hospital in Tooting and although he lost sight in one eye, he remained an excellent canoeist, competing for many years after his diagnosis.

I was sent to see an endocrine specialistat Kingston Hospital in Surrey, just down the road from where Alexis lived.

The specialist told me more about the pituitary gland, a small ovalshaped gland found at the base of the brain, below the optic nerve. It helps control the other glands in the body and releases key hormones that affect growth and other body functions.

Pituitary gland tumours are mostly benign but they can grow and exert damaging pressure on the brain and the optic nerves. That was what had been affecting my vision, and causing the agonising headaches.

The tumour was also interfering with the regulating hormones that the gland produces, which was what was causing me to lactate.

I was prescribed a drug called bromocriptine to stabilise my tumour and to inhibit the production of excess hormones.

Researching this medication on the internet, Donal was fascinated to discover-that some men had used it for what one website delicately termed 'sexual enhancement'.

'Your wife's got a brain tumour and you've got one thing on your mind,' I scolded him.
Bromocriptine was a lifesaver. Within months, my symptoms were reduced. Soon the good days out-numbered the bad.

The deterioration of my eyesight was halted and after eight weeks my vision was back to normal. I returned to being a size six. Furthermore, because the treatment worked I escaped having to undergo radio or chemotherapy.

Finally one evening, I realised I had gone the whole day without a headache. I broke down and wept tears of relief.

At the same time, lactation ceased. And there was a wonderful 'side effect'. The consultant had said that the treatment might help with ovulation and could even help me conceive. And that's exactly what it did. The result is our gorgeous two-year-old girl, Tiger.

When I became pregnant, the consultant suggested I come off the drugs. The after-effect of the initial treatment kept the symptoms at bay but now, after two years without the drugs, some problems have returned.

My headaches are back and my periods have become irregular again. I recently put on some weight, just like before.

This has meant more scans and clinics with the endocrinologist and the neurologist.
Last time, these appointments gave me nightmares. This time I have been feeling much more confident and I am facing my uncertain future with fortitude, or endeavouring to at least.

We had been trying for another child without success and had considered IVF but that was on hold until we got the results of my most recent tests. They reaffirmed the previous condition and I am now back on the same medication and treatment.

Tragically, our friend Alexis was not so fortunate as I have been. He had what is called transsphenoidal surgery for his tumour - usually carried out by making a small incision on the inside of the roof of the nose or by making a small opening under the lip to be able to reach the pituitary gland. The singer Russell Watson underwent the same procedure to have a tumour 'the size of two golf balls' removed.

But Alexis didn't make it. He died last November at the age of just 46. His untimely death really brought home to Donal and me just what we are up against.

As a family we have now recalibrated our priorities. Wherever Donal works around the world, he tries to bring the children --school allowing - and me.

The world of television has never been particularly family friendly but we have decided to make the work fit around us, rather than vice versa.

It was me who decided - very much against Donal's will - that he should do the ITV show Dancing On Ice earlier this year, as I knew it would give him a chance to spend more time with me and the kids.

I don't think I've ever seen a man pushed so far outside his comfort zone, although he quickly grew to love it.

A tumour can change your life, and the lives of those around you, in ways you don't anticipate.

All the time Dancing On Ice was on air I was managing my reacquaintance with my old symptoms. At one stage during the last few weeks of the show, Donal considered dropping out to concentrate on looking after me but I wouldn't let him entertain the idea of quitting. It was a family experience we all shared and enjoyed, from baby Tiger to Allegra. Tiger would even hug the TV screen when Daddy appeared.

Because of my illness, Donal and I have become more spiritual. Donal is not particularly religious but he has always accepted that his Catholic heritage and Christian values are embedded in his DNA. In a way, he views religion as a celestial insurance policy - Pascal's Wager, the philosophers call it, after the French thinker who argued that there was much to gain and nothing to lose from believing in God.

I hesitate to say we have renewed faith, but we have decided to baptise the children into the Church. My family, who are Muslim, understand that we have to do what we feel is right for us. I am determined to be christened at the same time as the children.

Just recently Donal was attacked by thugs in a wine bar in Surrey. I was with him, having earlier in the day undergone another brain scan. I was punched and kicked during the attack and actually ended up with more bruises than my husband. But we're used to living with this kind of threat and now we are learning to cope with a different kind of danger.

My illness has changed us in ways we never expected - the arrival of Tiger, new directions in Donal's own career, a shift in our life philosophy. Surprisingly, the changes are almost all for the better. We know we will get through this.

Centre for hormone production that's the size of a pea

The pea-sized pituitary gland sits in the centre of the brain, just above the back of the nose. It is linked by a stem to the hypothalamus and both are vital in producing essential hormones for the growth and functions of other glands in the body.

The most common problem with the pituitary is when a benign tumour develops.


There are nearly 100 different types of brain tumour and about ten per cent of these are in the pituitary gland. More common in older people, they grow slowly and do not spread to other parts of the body.

There are six types of pituitary tumour, from tumours that produce growth hormones (which can cause acromegaly or gigantism) to prolactin-producing tumours (where the hormone stimulates a woman to lactate and disrupts her menstrual cycle).

Symptoms can also include headaches and visual problems caused by the tumour pressing on the optic nerve.

Treatment ranges from surgery to radiation therapy and drug therapy.

Read more:

Saturday, August 8, 2009

New helpful doctor added to Maryland. Submitted by pituitary patient.

Friday, August 7, 2009

DEAR DR. DONOHUE: Is Cushing's disease curable? My sister has it. We live on opposite coasts, and I am quite worried about her. - W.R.

ANSWER: Cushing's disease comes about from an overproduction of cortisone and other adrenal gland hormones. The problem lies either in the pituitary gland, at the base of the brain, or in the adrenal glands. There is an adrenal gland on top of each kidney.

Regardless of the site, Cushing's disease can be cured. If there is a tumor in either the pituitary or the adrenal gland, as there usually is, it can be removed.


MaryO'Note:  Hmmm.  Cushing's can be cured.  Is it usually?  That's the question!

Thursday, August 6, 2009

Disordered and Increased Adrenocorticotropin Secretion with Diminished Adrenocorticotropin Potency in Obese in Premenopausal Women

Ferdinand Roelfsema, Petra Kok, Marijke Frolich, Alberto M. Pereira and Hanno Pijl

Department of Endocrinology and Metabolic Diseases, Leiden University Medical Center, 2333ZA Leiden, The Netherlands

Address all correspondence and requests for reprints to: Dr. Ferdinand Roelfsema, Department of Endocrinology and Metabolic Diseases, Leiden University Medical Center, Albinusdreef 2, 2333ZA Leiden, The Netherlands. E-mail:


Context: The pituitary-adrenal ensemble of obese humans is marked by increased urinary excretion of cortisol and its metabolites in the face of normal circulating cortisol levels. For better understanding of the (patho) physiological meaning of these changes, the mechanistic underpinnings need to be clarified.


Intervention and Methods: We investigated 17 obese women [body mass index (BMI) 30–39.4 kg/m2] and 14 normal women (BMI, 18.3–24.8 kg/m2) who underwent 24-h blood sampling at 10-min intervals, and plasma ACTH and cortisol concentrations were measured with sensitive assays. Data were analyzed with a new deconvolution program, approximate entropy (ApEn) analyses, and cosinor regression.


Outcome: ACTH and cortisol production rates were higher in obese women than in controls and correlated with BMI. Secretion of ACTH correlated with leptin (R = 0.63; P = 0.0001) and insulin (R = 0.67; P = 0.0001). ACTH ApEn and forward ACTH-cortisol cross-ApEn were diminished in obese women. The half-maximal effective concentration (ED50) of ACTH pulses vs. cortisol pulses was higher in obese women (38.3 ± 4.9 vs. 25.1 ± 3.7 ng/liter; P = 0.03), indicating decreased potency of ACTH. The diurnal properties of ACTH and cortisol secretion were unchanged in obese females.


Conclusion: Obese women exhibit enhanced ACTH and cortisol 24-h production compared with lean controls. The amplified ACTH drive is accompanied by decreased secretory regularity and diminished forward coupling between ACTH and cortisol. In addition, the potency of ACTH is decreased in obesity.


Hypercoagulable State in Cushing’s Syndrome: A Systematic Review

Bregje Van Zaane, Erfan Nur, Alessandro Squizzato, Olaf M. Dekkers, Marcel (Th) B. Twickler, Eric Fliers, Victor E. A. Gerdes, Harry R. Büller and Dees P. M. Brandjes

Department of Internal Medicine (B.V.Z., E.N., V.E.A.G., D.P.M.B.), Slotervaart Hospital, 1066 EC Amsterdam, The Netherlands; Department of Vascular Medicine (B.V.Z., A.S., M.B.T., V.E.A.G., H.R.B.), Academic Medical Center, University of Amsterdam, 1105 AZ Amsterdam, The Netherlands; Department of Clinical Medicine (A.S.), University of Insubria, 21100 Varese, Italy; Departments of Clinical Epidemiology (O.M.D.) and Endocrinology and Metabolic Diseases (O.M.D.), Leiden University Medical Center, 2333 ZA Leiden, The Netherlands; and Department of Endocrinology and Metabolism (E.F.), Academic Medical Center, University of Amsterdam, 1105 AZ Amsterdam, The Netherlands

Address all correspondence and requests for reprints to: B. Van Zaane, Department of Internal Medicine, Slotervaart Hospital, Louwesweg 6, 1066 EC Amsterdam, The Netherlands. E-mail:

Context: It has been debated whether an increased risk of venous thromboembolism (VTE) exists in patients with Cushing’s syndrome.

Objective: We aimed to summarize published literature on the effects of endogenous hypercortisolism on coagulation and fibrinolysis, as well as on the clinical outcome of VTE.

Data Sources: We searched the MEDLINE and EMBASE databases up to July 2008. Review of reference lists further identified candidate studies.

Study Selection: Two investigators independently performed study selection and data extraction. Eligible studies had to include Cushing’s syndrome patients and either evaluate hemostatic parameters in comparison with control persons or posttreatment levels or describe the occurrence of VTE.

Data Extraction: The Newcastle-Ottawa Scale was used to assess study quality. A scoring system divided studies into categories of low, medium and high quality.

Data Synthesis: Of 441 identified publications, 15 reports were included. They contained information on eight cross-sectionals, two intervention, and eight cohort studies. No high-quality studies were identified. Hypercoagulability was suggested by high levels of factor VIII, factor IX, and von Willebrand factor and by evidence of enhanced thrombin generation. A risk of 1.9 and 2.5% was reported for VTE not provoked by surgery, whereas risk of postoperative VTE varied between 0 and 5.6%, with one outlier of 20%. VTE was reported as the cause of death in 0–1.9% of Cushing’s syndrome patients.

Conclusions: Available studies suggest a high risk of venous thrombosis in patients with Cushing’s syndrome. Glucocorticoid-induced hypercoagulability as well as surgery and obesity almost certainly contribute to this thrombotic tendency.


Temozolomide treatment of a pituitary carcinoma and two pituitary macroadenomas resistant to conventional therapy

Casper Hagen, Henrik Schroeder, Steinbjorn Hansen, Claus Hagen and Marianne Andersen

C Hagen, Department of Endocrinology, Odense University Hospital, Odense C, Denmark
H Schroeder, Department of Pathology, Odense University Hospital, Odense C, Denmark
S Hansen, Department of Oncology, Odense University Hospital, Odense C, Denmark
C Hagen, Department of Endocrinology, Odense University Hospital, Odense C, Denmark
M Andersen, Department of Endocrinology, Odense University Hospital, Odense C, Denmark

Correspondence: Casper Hagen, Email:


OBJECTIVE: Aggressive pituitary tumours may be difficult to treat. Temozolomide (TMZ) is an alkylating cytostaticum. In a small number of cases, TMZ therapy has been reported to reduce pituitary tumour size and hormone hypersecretion.

DESIGN: We present three patients with pituitary tumours treated with TMZ. One tumour was initially a macroprolactinoma that developed into a mixed GH and PRL- secreting carcinoma (patient A). To our knowledge, this is the first published in English literature. Two adenomas, a macroprolactinoma (patient B) and a clinically non-functioning pituitary adenoma (NFA) (patient C), were highly invasive. The three patients suffered from extensive tumour mass effects, and all tumours were resistant to conventional treatment.

METHOD: TMZ, 150-200 mg/m2 of body surface area was administered orally for 5 days during each 28 day cycle.

RESULT: During TMZ therapy, tumour sizes were significantly reduced, hormone levels normalized, and symptoms of mass effects decreased in all three cases. The carcinoma was treated from 2004 to 2006 (23 months). 3 years after terminating treatment, tumour has not regrown and hormone levels are normalized. Immunohistochemical staining for methylguanine DNA methyltransferase (MGMT) was negative in two patients (A and B), and in one patient (C) a few nuclei stained positive.

CONCLUSION: TMZ therapy significantly decreased tumour volume, hormone hypersecretion and symptoms in all three patients, corresponding to the pathological findings regarding MGMT. TMZ therapy may be a new option for the treatment of resistant pituitary adenomas.