Day 28, Cushing’s Awareness Challenge 2016

Posted on April 28, 2016 by MaryO

Over the years, we went on several Windjammer Barefoot Cruises.  We liked them because they were small, casual and were fairly easy on the wallet.

They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever.  One trip we were supposed to go to Saba but couldn’t make port.  A lot of people got off at the next port and flew home.

The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip.  We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride.

The last trip we took with them was about two years before I started having Cushing’s problems.  (You wondered how I was going to tie this together, right?)

The cuise was uneventful, other than the usual mishaps like hitting docks, missing islands and so on.  Until it was a particularly rough sea one day.  I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery.  I fell and cracked the back of my head on the curved edge of a table in the dining area.  I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery I got some morphine.

We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all.

The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).

All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.

The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome  by Jim Carrier.  The ship, which was sailing in the center of the hurricane, experienced up to 50-foot (15 m) waves and over 100 mph (160 km/h) winds, causing the Fantome to founder off the coast of Honduras.

This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.

I read this book and I was really moved by the plight of those crew members.

I’ll never know if that hit on my head contributed to my Cushing’s but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.

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Cushing’s disease associated with USP8 mutations

Posted on April 5, 2016 by MaryO

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April 04, 2016

Oral Session: Pituitary Patients and Outcomes

Cushing’s disease associated with USP8 mutations

RR Correa, FR Faucz, A Angelousi, N Settas, P Chittiboina, MB Lodish, CA Stratakis

Summary: In Cushing’s disease (CD), pituitary corticotroph adenomas secrete excessive adrenocorticotropic hormone (ACTH), resulting in hypercortisolism. Often, the genetic pathogenesis of CD remains unknown, but recent studies have shown that the ubiquitin-specific protease 8 gene (USP8) is frequently mutated in CD. This gene codes for a protein deubiquitinase that inhibits the lysosomal degradation of the epidermal growth factor receptor. Researchers determined that pediatric patients with USP8 mutations were predominantly female and presented with higher ACTH levels than control patients.

Methods:

  • To further study the prevalence of mutations in USP8, researchers sequenced the complete USP8-coding and surrounding intronic regions in 97 patients with diagnosed CD by Sanger sequencing of germline DNA (n=97) and tumor DNA (n=50).
  • They analuzed biochemical and clinical characteristics in all the patients with predicted (by in silico analysis) damaging USP8 mutations and it was compared to patients without the mutation (control).

Results:

  • Overall researchers identified 18 (18.5%) patients with corticotroph adenomas who had USP8mutations, 13 with germline mutation, 2 with a germline and a new somatic mutation, and 5 with somatic mutation only.
  • All the somatic mutations that were not present at the germline level were mutations in the previously described hotspot.
  • Female-to-male ratio in the patients with USP8 mutations was 3.5:1 compared to the control ratio of 1:1 (P=0.05).
  • The mean age was 13 years old (range 6-18) and 72% (13/18) were whites.
  • Three of the mutant tumors were macroadenomas (≥ 1 cm) and 15 were microadenomas (< 1 cm).
  • In cases, mean basal plasma ACTH was 53.2±28.5 pg/mL and 39.6±19.1 pg/mL in the control group (P=0.02).
  • Researchers did not note any statistically significant differences in cortisol levels between the groups.

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Young people with Cushing syndrome may be at higher risk for suicide, depression

Posted on March 30, 2016 by MaryO

Children with Cushing syndrome may be at higher risk for suicide as well as for depression, anxiety and other mental health conditions long after their disease has been successfully treated, according to a study by researchers at the National Institutes of Health.

Cushing syndrome results from high levels of the hormone cortisol. Long-term complications of the syndrome include obesity, diabetes, bone fractures, high blood pressure, kidney stones and serious infections. Cushing’s syndrome may be caused by tumors of the adrenal glands or other parts of the body that produce excess cortisol. It also may be caused by a pituitary tumor that stimulates the adrenal glands to produce high cortisol levels. Treatment usually involves stopping excess cortisol production by removing the tumor.

“Our results indicate that physicians who care for young people with Cushing syndrome should screen their patients for depression-related mental illness after the underlying disease has been successfully treated,” said the study’s senior author, Constantine Stratakis, D(med)Sci, director of the Division of Intramural Research at NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. “Patients may not tell their doctors that they’re feeling depressed, so it’s a good idea for physicians to screen their patients proactively for depression and related conditions.”

Cushing syndrome may affect both adults and children. A recent study estimated that in the United States, there are 8 cases of Cushing syndrome per 1 million people per year.

The researchers published their findings in the journal Pediatrics. They reviewed the case histories of all children and youth treated for Cushing syndrome at NIH from 2003 to 2014, a total of 149 patients. The researchers found that, months after treatment, 9 children (roughly 6 percent) had thoughts of suicide and experienced outbursts of anger and rage, depression, irritability and anxiety. Of these, 7 experienced symptoms within 7 months of their treatment.

Two others began experiencing symptoms at least 48 months after treatment.

The authors noted that children with Cushing syndrome often develop compulsive behaviors and tend to become over-achievers in school. After treatment, however, they then become depressed and anxious. This is in direct contrast to adults with Cushing syndrome, who tend to become depressed and anxious before treatment and gradually overcome these symptoms after treatment.

The authors stated that health care providers might try to prepare children with Cushing syndrome before they undergo treatment, letting them know that their mood may change after surgery and may not improve for months or years. Similarly, providers should consider screening their patients periodically for suicide risk in the years following their treatment.

Source: NIH/Eunice Kennedy Shriver National Institute of Child Health and Human Development

From http://www.news-medical.net/news/20160329/Young-people-with-Cushing-syndrome-may-be-at-higher-risk-for-suicide-depression.aspx

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Webinar on Management Options for Pituitary Tumors March 22

Posted on March 19, 2016 by MaryO

Dr. Andaluz will cover the full breadth of treatment options from managing endocrine function, surgical procedures (transsphenoidal, endoscopic, and keyhole approaches), radiotherapy / radiosurgery, and the importance of getting care at a multidisciplinary center.

Dr. Norberto Andaluz is a neurosurgeon with the Mayfield Clinic and University of Cincinnati Brain Tumor Center. He is also Associate Professor of Neurosurgery at the University of Cincinnati, Surgical Director of the Neuroscience Intensive Care Unit, and Director of Neurotrauma at the University of Cincinnati Neuroscience Institute. He specializes in the treatment of all disorders and diseases of the brain and spine, but in particular, traumatic brain injury, aneurysms, arteriovenous malformations (AVMs), intracerebral hemorrhage, stroke, carotid artery disease, moyamoya disease and brain tumors (with special training in skull base tumors like pituitary adenoma). Dr. Andaluz received his medical degree from Unversidad Nacional de Rosario in Argentina. He completed his residency in neurosurgery at Instituto de Neurología y Neurocirugía at Sanatorio Parque in Rosario, Argentina and earned a fellowship in cerebrovascular surgery from the University of Cincinnati. Professional memberships include the American Heart Association, Congress of Neurological Surgeons, National Neurotrauma Society, Neurocritical Care Society and North American Skull Base Society.

Register at http://pituitary.org/events/webinar-management-options-for-pituitary-tumors

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Sharmyn McGraw on Blogtalk Radio

Posted on March 18, 2016 by MaryO

sharm

 

March 22, 2016 7:00pm Eastern  Sharmyn speaks to medical professionals about the spiritual side of pain advocacy for patients with pituitary tumors and hormonal related disorders!  She’ll share how she turned the darkest part of her life into the best part.  Watch out because Sharmyn will also use Tumor Humor to keep the message light and fun.

Sharmyn will be be speaking with her good friend Garrett Miller, Rated G Radio. Garrett is fun, smart and to say creative is an understatement.

Garrett and Sharmyn will be having a conversation about how she turned being misdiagnosed for seven horrible years with Cushing’s disease into one of the best parts of her life.

Many of you have heard her talk about Cushing’s, but very few people have heard the back story, the personal and raw part of Sharmyn’s journey… well join them on March 22, at 7:00pm eastern and you can hear it all and join in also.

Use the call in number and let’s chat.

Sharmyn McGraw joins the show Tuesday to talk about turning Pain into Passion and Passion into Action!

Listen to the archives at http://www.blogtalkradio.com/ratedgradio/2016/03/22/sharmyn-mcgraw-turning-pain-into-passion

 

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