Wednesday, June 30, 2010

Irreversible Effects of Previous Cortisol Excess on Cognitive Functions in Cushing’s Disease

I am thankful to have found Laika's MedLibLog: A medical librarians exploration of the web 2.0 world and beyond.

I find this April 2010 article very troubling. In fact, as a lifetime straight A student, president of my high school honor society, magna cum laude college graduate, it may be more than troubling. It is devastatingly sad, because--from what other Cushing's patients tell me--it may indeed be true. ~mm

Irreversible Effects of Previous Cortisol Excess on Cognitive Functions in Cushing’s Disease (click here for full article)
Symptoms of Cushing’s disease are related to the effects of high levels of cortisol or other glucocorticoids on the immune system, the metabolism and the brain. Symptoms include rapid weight gain, particularly of the trunk and face (central obesity, “moon face” and buffalo neck), thinning of the skin and easy bruising, excessive hair growth, opportunistic infections, osteoporosis and high blood pressure.

Less emphasized than the clinical features are the often very disabling cognitive deficits and emotional symptoms that accompany Cushing’s disease. Cushing patients may suffer from various psychological disturbances, like insomnia, mood swings, depression and manic depression, and from cognitive decline. Several studies have shown that these glucocorticoid induced changes are accompanied by atrophy of the brain, and in particular of the hippocampal region, leading to hippocampal volume loss and a profound loss of synapses [2]. This hippocampal loss seems reversible [2], but are neurological and psychological defects also restored? This is far more important to the patient than anatomic changes.

If we listen to Cushing patients, who are “cured” and have traded Cushing’s disease for Addison’s disease, we notice that they feel better after their high levels of cortisol have normalized, but not fully cured (see two examples of ex-Cushing patients with longlasting if not irreversible health) problems in my previous post here. [added 2010-04-17)

Monday, June 28, 2010

Korlym: New Medication in Clinical Trials to treat Cushing's

Wouldn't this be interesting if this could really help some people. ~m


Corcept Therapeutics Nears Completion of Enrollment in Phase 3 Cushing's Syndrome Study -- Data Announcement Anticipated by Year End

MENLO PARK, CA, Jun 25, 2010
(MARKETWIRE via COMTEX) --

Corcept Therapeutics Incorporated ("Corcept"), a pharmaceutical company engaged in the discovery and development of drugs for the treatment of severe metabolic and psychiatric disorders, today announced that it had enrolled 49 of the planned 50 patients in its Phase 3 trial of CORLUX(R) for the treatment of Cushing's Syndrome and expects the fiftieth patient to begin dosing next week.

"We are near our target of dosing 50 patients in our Phase 3 study of CORLUX for the treatment of Cushing's Syndrome. We remain on track to announce top line results from the trial by the end of this year," said Joseph Belanoff, M.D., Chief Executive Officer of Corcept.

Cushing's Syndrome Phase 3 Trial Nears Completion of Planned Enrollment of 50 Patients

We have dosed 49 of the planned 50 patients in our open-label Phase 3 trial of CORLUX in patients with endogenous Cushing's Syndrome, which is being conducted at 20 leading medical facilities throughout the United States. The final patient is expected to be dosed next week.

The FDA has indicated that this single 50-patient open-label Phase 3 study of CORLUX may provide a reasonable basis for the submission of a New Drug Application ("NDA") for Cushing's Syndrome. In the study, each patient's dose is titrated to clinical benefit by their study investigator and the primary endpoints (either an improvement in glucose tolerance or blood pressure) are measured at the end of 24 weeks.

We expect to announce the top-line results of this study by the end of 2010 and to submit our NDA to the FDA in the first quarter of 2011.

About Cushing's Syndrome

Endogenous Cushing's Syndrome is caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol due to either cortisol or adrenocorticotropic hormone (ACTH) production by tumors. Cushing's Syndrome is an orphan indication which most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every one million people are newly diagnosed with this syndrome each year, resulting in over 3,000 new patients in the United States. An estimated 20,000 patients in the United States have Cushing's Syndrome. Symptoms vary, but most people have one or more of the following manifestations: high blood sugar, diabetes, high blood pressure, upper body obesity, rounded face, increased fat around the neck, thinning arms and legs, severe fatigue and weak muscles. Irritability, anxiety, cognitive disturbances and depression are also common. Cushing's Syndrome can affect every organ system in the body and can be lethal if not treated effectively.

About CORLUX

Corcept's first-generation compound, CORLUX, also known as mifepristone, directly blocks the cortisol (GR-II) receptor and the progesterone (PR) receptor. Intellectual property protection is in place to protect important methods of use for CORLUX. Corcept retains worldwide rights to its intellectual property related to CORLUX.

About Corcept Therapeutics Incorporated

Corcept is a pharmaceutical company engaged in the discovery and development of drugs for the treatment of severe metabolic and psychiatric disorders. The company has two ongoing Phase 3 programs: CORLUX for the treatment of Cushing's Syndrome, and CORLUX for the treatment of the psychotic features of psychotic depression. Corcept also has a Phase 1 program for CORT 108297, a selective cortisol receptor antagonist. Corcept has developed an extensive intellectual property portfolio that covers the use of GR-II antagonists in the treatment of a wide variety of psychiatric and metabolic disorders, including the prevention of weight gain caused by the use of antipsychotic medication, as well as composition of matter patents for our selective GR-II antagonists.

CONTACT:
Caroline Loewy
Chief Financial Officer
Corcept Therapeutics
650-688-8783

SOURCE: Corcept Therapeutics

Original Marketwire article


Sunday, June 27, 2010

Scott Hamilton: Pituitary Patient & Advocate

Ice Skater Scott Hamilton Undergoes Brain Surgery, People.com

Olympic champ Scott Hamilton underwent brain surgery Wednesday to remove the recurrence of a benign tumor near his pituitary gland, which first appeared in 2004. "They're happy with the progress of the entry process, and now [doctors] can begin to get rid of the tumor," the figure skater's rep, Michelle Thornbury, tells PEOPLE of the procedure, which was completed late Wednesday.

Hamilton, 51, had the surgery in Boston, where he is surrounded by family, including his wife Tracie, their friends and his brother Steve. "They're all feeling the love coming from all of us," the rep says. After the surgery was complete, Hamilton's rep told PEOPLE, "Scott is resting comfortably and expected to make a full recovery. He and his family are so thankful to the doctors and surgical team for taking such good care of him and grateful to everyone for their thoughts and prayers."

He will remain in ICU for a couple days and is expected to return home next week.

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Scott Hamilton undergoes surgery for recurrent brain tumor, CelebrityDiagnosis.com


Craniopharyngiomas are tumors derived from pituitary gland tissues, and typically form in area above the pituitary gland. It is most common in children between 5 to 10 years old, and again in individuals over 50. It is fairly uncommon, only occurring in 2 per 100,000 people.

Craniopharyngioma causes symptoms in one of three ways:

1. Increasing the pressure on the brain (increased intracranial pressure). This causes symptoms of headache, nausea and vomiting, and decreased balance.

2. Disrupting the function of the pituitary gland. This leads to hormone imbalances which can cause growth failure and delayed puberty in children, loss of normal menstrual function or sex drive, increased sensitivity to cold,fatigue, constipation, dry skin, nausea, low blood pressure, and depression. Pituitary stalk compression can lead to diabetes insipidus(DI)- causing increased thirst and urination, and may increase prolactin levels- causing a milky discharge from the breast(galactorhea).

3. Damaging the optic nerve causing visual disturbances, and even blindness.

Treatment of craniopharyngioma is either surgical or with radiation, depending on the size and location of the tumor.

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Not Again: First, Scott Hamilton Fought Off Cancer. Now the Popular Skater Is Battling a Rare Brain Tumor, People.com, March 2005

Now Hamilton, 46, must battle craniopharyngioma, a rare, noncancerous tumor near his pituitary gland that, if left untreated, could leave him blind.

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Scott is a member and advocate for the Pituitary Network Association. He appears in a short but important video on the PNA website.

Heavy health burden: Fat but not my fault

The lovely and lively Sharmyn McGraw is the founder of Hormones411.com and an omnipresent Cushing's activist.

Sharmyn's winding path to diagnosis was chronicled on the Discovery Health program Mystery Diagnosis (click to see full segment).

This past week, Sharmyn was featured in an MSNBC.com article entitled Weight gain from illness, medication spurs sudden shame.

I want to thank Sharmyn for her persistence in getting the word out there about Cushing's. Every time she shares her own journey, Sharmyn educates the public and saves sufferers. One person at a time. Thanks for all you do, Sharmyn!

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Weight gain from illness, medication spurs sudden shame

by Joan Raymond and Jim Seida, MSNBC contributors; updated 6/23/2010


Sharmyn McGraw knows what it’s like to have a body that people envy. For most of her adult life, the 5-foot, 4-inch former flight attendant was a lean size 2. No more. McGraw, 48, now weighs 189 pounds, down from a one-time high of 250 pounds.



It’s not like McGraw stuffed her face with super-size-me burgers and fries. She’s sick. In 2000, she was diagnosed with a rare condition called Cushing’s disease, caused by a benign pituitary tumor. One of the hallmarks of Cushing’s is massive weight gain, particularly in the trunk, face and back.

Though surgery to remove the tumor was successful, McGraw still suffers with severe hormonal imbalances, making weight loss and weight maintenance difficult. And it’s those extra pounds — or more accurately, people’s perception of those extra pounds, she says — that can be as tough to deal with as any disease or treatment that causes weight gain.

McGraw knows all about indignities. She got dumped by a personal trainer after she couldn’t shed pounds fast enough. A doctor told her she could lose weight if she was locked in a closet for a week with only water to drink. Even well-meaning friends could be annoying as they told her about the latest-greatest diet.

'Fat is fat'
“I know how people look at me now, and how people looked at me when I was fit,” says McGraw, who runs a pituitary and brain tumor patient support group in Santa Monica, Calif. “The bias out there against heavy people is incredible. Having an illness doesn’t matter. In people’s eyes, fat is fat.”

In a society that value’s thinness, McGraw’s dilemma isn’t unusual. Weight bias is rampant, although women seem to experience it at lower weights. Though folks who have gained weight due to medical conditions or by taking prescribed medications like steroids that can cause weight gain are only a small fraction of the overweight and obese, they too feel the anti-fat scorn.

“You would think that illness would be somewhat protective (against bias),” says obesity researcher Marlene Schwartz, deputy director of The Rudd Center for Food Policy and Obesity at Yale University. “But (as a society) we like to assign fault. We think it’s so easy to be healthy, and therefore, not fat.”

Because obesity and all of its co-morbidities like heart disease, stroke, diabetes, some cancers, and asthma, to name a few, rack up big health care bills (according to a 2009 CDC study, America now spends as much as $147 billion annually on the direct and indirect costs of obesity) some researchers fear this bias might get worse as health care reform plays out.

“There is some evidence that shows that for whatever reason weight bias is increasing,” says obesity researcher Robert Carels of Bowling Green University in Ohio. His own research published in the journal Eating and Weight Disorders shows a “strong level of contempt” for the obese, especially among people who believe the weight is highly controllable. “There’s a feeling of why should I have to pay for them (the obese), if they can do something about their weight,” says Carels. “As a society we have a strong, pull-yourself-up-by-the-bootstrap mentality, and the overweight are the targets.”

You don’t have to tell that to Nellie Sabin, 56, of Cape Cod, Mass. About 15 years ago, Sabin developed severe migraines, which her doctor treated with a long-term course of steroids. Unfortunately, the steroids produced a massive weight gain of 100 pounds and rebound headaches that lasted about five days.

“I was a complete mess,” says Sabin, a book editor and writer. “I thought I was going to die.” The long-term steroid treatment caused Sabin to develop a hormone disturbance and she also developed severe arthritis in her back, making it difficult to exercise. “Unless you have experienced it, you can't imagine the prejudice and shame associated with being fat, even if it isn't your fault,” says the 5-foot, 10-inch Sabin, who once weighed 155 pounds but now weighs more than 300 pounds.

The good news is that Sabin has the full support of her husband and children. The bad news is that it’s tough to get respect from other people. “Everyone assumes I’m fat because I eat Snickers bars for breakfast. They also assume I’m stupid and have no willpower,” says Sabin. “At this point I would rather not have to meet people than have to explain I’m not a moron and I’m fat for medical reasons.”


Ashamed of own prejudice
Liz Gabor of Cleveland, Ohio, used to be one of those people that thought the obese were an easy target for loathing. That is until she became a self-described “fat girl,” after gaining 60 pounds in about 18 months despite eating well and exercising. The diagnosis: insulin resistance.

“I thought that was a disease that couch potatoes got, so I was embarrassed about everything, and it didn’t help that people looked at me and thought I was bingeing on chips and ice cream all night,” says Gabor, whose weight jumped from 125 pounds to 185 pounds.

Before developing a rare condition called Cushing's disease, Sharmyn McGraw, seen in 1990, was 5-feet, 4-inches and 120 pounds.

She is now taking medication to better help her body respond to insulin and to help her lose weight.

Gabor believes her “time of fatness,” is payback for her years of judging the obese. “I think weight gain, no matter what the cause, can be really complex for some people. But I think I’m even more embarrassed about the way I thought about obesity. It’s very shameful.”

That’s not to say that Gabor, McGraw and Sabin are at peace with their bodies. They want the pounds gone. And the sooner, the better. In the interim though, they are just trying to get through the day.

“I think society makes it tough for everyone to accept the way they look,” says McGraw. “When I was a size 2, I probably thought I could have had a better body. My gosh, that’s really kind of funny now.”

Joan Raymond is a freelance journalist whose work has appeared in Newsweek, the New York Times, MORE and Woman's Day.

© 2010 msnbc.com

What You Must Know about Adrenal Crisis

I just found this page of VERY IMPORTANT information about adrenal crisis that Cushing's patients often face, either after pituitary surgery or after their adrenal glands are removed in a procedure called bilateral adrenalectomy, or BLA.

I am thankful to MaryO, the founder of Cushing's Help & Support.com and Cushie.com

This adrenal crisis page is a very informative for the patient, the caretakers, and emergency medical folks.  Many Cushies print this information and carry it along with their hydrocortisone and Solu-cortef (actovial) meds. They post the information on their refrigerators.

Be sure to read patient stories such as mom Jackie and daughter Sam's situation that went very, very wrong in Robin's post, Stars Go Blue. It brings tears to my eyes every time I read it.

This graphic from Sue explains it all, in a nutshell:

Saturday, June 26, 2010

Did You Know You Have a Bill of Rights as a Patient?

 I encourage all of you to join and/or donate money to the Pituitary Network Association.  The serious tone is appreciated, and I always felt like they were on the patients' side.  Today, I want to share the PNA's Patients' Bill of Rights.  This disease beats down the patient, and sometimes, we forget what rights we have or should have.  Let this serve as a reminder on your journey to better health. Thanks to the PNA for all that they do.

~Melissa (emphasis below mine)

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Patients bill of rights



Preamble

The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders.

PNA is supported by an international network of the world's finest physicians and surgeons. Our goal is to reach every patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. We are doing this in three ways: (1) By providing public awareness programs and educational seminars, (2) By assisting the medical community in developing uniform standards for early diagnosis, surgery, radiation, pharmacological treatment and follow-up, and (3) by having interactive Web sites and referral program on these Web sites.

Our Rights

  • Pituitary diseases, tumors and the resultant hormonal imbalances shall be recognized as a serious, major public health problem afflicting a large segment of the world's population.

  • The financial and intellectual resources of my government and our public and private health services shall be as fairly allocated to me and my disorder as they are to any other life-threatening and life-altering disease.

  • I have a right to an early and appropriate diagnosis, treatment, care and medical intervention by the experts in these fields of medicine. I have an inalienable right to be told of - and allowed to use, whenever possible, any and all medications and treatment methods past, present or future -which will complete or assist in my healing.

  • Upon completion of any medical evaluation, treatment and care, I am entitled to the emotional and psychological care afforded anyone else with psycho-socially affective disorders.

  • I reaffirm my right to be treated completely so I may reclaim my place in society and my family as a fully functioning and contributing member.

  • I shall not be discriminated against in my workplace or any other part of society because of my physical, mental or emotional state.

  • There shall not be any financial, insurance, job, or promotional stigma attached to my diseases discovery, medical care or emotional recovery. My future life shall only be limited by conditions not under man's ability to rectify.

  • My family and coworkers have a right to be informed and counseled about my illness and Its many manifestations. In order for them to understand and accept the temporary limitation to my job performance and my family obligations, they must if possible, become part of my healing environment.

  • I reaffirm to the world: I am a valuable member of the society and family of man. My life is too valuable to waste. It is too costly to society and too detrimental to my family to allow me to merely exist at their sufferance and largesse.
 
  • I have the right to be believed! Just because a physician has not yet heard of, or seen, my symptoms before, does not mean they are not real and deserving of medical care and further investigation.

Monday, June 14, 2010

Adrenal Crisis Letter

When multiple pituitary surgeries fail to resolve the symptoms, Cushing's patients often have to move forward by having an operation to remove their adrenal glands--the maker of cortisol. They must carry around an adrenal crisis letter explaining their condition with them at all times. This will notify medical professionals about the care that is required for us. Often, a person in adrenal crisis can not think clearly or advocate for themselves. Adrenal insufficiency or adrenal crisis is very serious. It requires a trip to the emergency room for immediate care.



Thanks to you, Robin, for sharing this information on your 365 Days with Cushing's blog. We wish you the best for your upcoming bilateral adrenalectomy (BLA).

~Melissa

COOL DIAGRAM & DOCTORS SHARE WHAT THEY KNOW WITH PATIENTS

Hi everyone.

I have been doing a lot of research online, and I want to share some of my findings. With a disease this complex, there is always more to learn.

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National Adrenal Disease Foundation has the best diagram that I have seen to explain the relationship between the pituitary and the adrenal glands.


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The Swedish Neuroendocrine Institute's Pituitary Center in Seattle, Washington has held several conferences recently that are particularly important to pituitary patients. I applaud their efforts, and I am thrilled that they have posted videos of the conferences' presentations online. These very professional videos show the speaker at the podium in a smaller screen and the presentation up close, enabling us to read the "slides" as they present them. WOW--see the speaker and the screen! This makes my day!

It is also refreshing to finally listen in, like a fly on the wall, to many different physicians talking about a disease you have. We typically only see our ONE doctor about our disease. Seeing multiple doctors with in depth knowledge wraps the patients in warmth and comfort like a warm blanket. We need that.

While patients, family, and friends are obvious beneficiaries of these efforts, the real change in medical care will come when physicians see these videos. General practitioners, internal medicine, and ob/gyn doctors often see Cushing's patients first, and many don't realize what they are seeing.  Many patients walk first into their local doctors, who may only see an occasional pituitary patient, for help. Unfortunately, these local doctors are often confused about testing, diagnosis, and especially treatment plans, which is not too hard to understand since they only read about Cushing's in one "rare disease" chapter during medical school. Therefore, this online effort will give doctors a chance to learn from experts, and this will undoubtedly improve the road for pituitary patients.

I want to thank the SNIPC for sharing this helpful information with all of us.


A Patient's Road Map to the World of Pituitary Disorders, 2010.

Pituitary Symposium (Patient Presentations), 2009

Seattle Pituitary Center Patient Education Day, 2009

Physician Conference: Advances in Cushing's, 2009

You will find direct links to these presentations, as well as many important others, on this link.


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That's all for now. See you next time.
~Melissa