Monday, March 12, 2012

Cushing's Help blogtalkradio program

Thank you, as always, to MaryO and RobinS for making this chat with Dr Friedman, the wonderfully knowledgeable and compassionate diagnostician, possible. This is truly for the betterment of all those suffering with Cushing's as well as any friends or family who care to take a listen. 
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Have questions about the new Korlym? How about Korlym vs ketoconazole? About medical vs surgical treatment for Cushing's.   Ask Dr. Theodore Friedman.

Posted Image


Listen live at http://www.blogtalkr...es-for-cushings
Call in to ask your question at 
(646) 200-0162
This interview will be archived afterwards at the same link and on iTunes Cushie Podcasts.


Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushing's disease and syndrome.

Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.

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Catch up on all the Cushing's information Dr Friedman has shared with this community through the years. 


Wednesday, February 29, 2012

Rare Disease Day: I have Cushing's

Today, I am thankful for the friends I have met along the way. Cushing's has devastated our lives in unimaginable ways, but it has brought courageously delightful people into my friendsphere.  

I thank Trisha for her efforts to highlight the difficulty in diagnosing this rare disease.  Please consider taking just a few moments to watch this youtube video she put together for our whole community.

Cushing's Disease: A Numbers Game


Tuesday, February 21, 2012

CORT Does Well in After Hours Trading

I first saw the word Cushing's almost five years ago. Even at that time, there was talk in the Cushing's community of a far-away land where magical medicine brought cures when surgeries couldn't. We have waited a long time for this.

Many of us patients with Cushing's have been closely following Corcept's march towards FDA approval for the drug (Korlym, was Corlux).  It seems investors took the time they needed to research Corcept a little more over the long weekend, because folks are buying the stock and driving the price up. 

Could the market surge have been from all of us Cushies?  Maybe a portion, but not too much.  We spend all our money on medical bills!
  
I wanted to share the article Corcept Has Upside Following Drug Approval. I posted a comment under the article,  and I hope that it will be accepted and posted (hi Adam!!).  This is what I wrote:


I have persistent Cushing's disease, and I will be eligible to take Korlym. I am also a stockholder. Wanna know more about the devastating effects of Cushing's? Read more about it on my blog, http://cushingsmoxie.blogspot.com/.  Besides an investment, this knowledge may save the life of someone you know.



*****
Try Jim Cramer's Action Alerts PLUS

Corcept Has Upside Following Drug Approval

Adam Feuerstein

02/21/12 - 12:54 PM EST
MENLO PARK, Calif. (TheStreet) -- Corcept Therapeutics(CORT) deserves a heaping platter of congratulations for winning FDA approval for Korlym, the first--in-class treatment for a rare hormonal disorder known as Cushing's syndrome. Corcept shares are up 48% to $4.47 in Tuesday trading following Friday night's approval announcement.
A foul serving of crow is what I deserve for not believing Corcept would get Korlym approved on its first attempt. More on what I got wrong later; first, let's look at Corcept's future with Korlym approved.
Corcept plans to launch Korlym on May 1. The company has yet to disclose pricing but Alan Leong of Biotech Stock Research estimates conservatively one year of therapy will cost $75,000. [Leong deserves kudos for correctly predicting Korlym's approval.]
Again being conservative, Leong estimates that about 2,000 Cushing's patients in the U.S. will be eligible for Korlym therapy, leading to $150 million in U.S. sales by 2016. Corcept is pursuing Korlym approval in Europe, which could ultimately generate another $75 million in sales or $225 million total.
Corcept intends to market Korlym on its own in the U.S. and will only need to hire a small sales force since most Cushing's patients are treated by a handful of specialists. This means Corcept should be able to maintain high profit margins.
The FDA stated that as many as 5,000 patients may be eligible for Korlym treatment, which implies a peak U.S. market opportunity of $375 million (assuming $75,000-per-year pricing.)
Corcept's current market cap of $370 million is not fully valuing Korlym's market potential. Why? Likely because some early investors in the company are taking profits now while others may wait to see how Korlym launches before jumping in.
Corcept is also studying Korlym as a treatment for psychotic depression and weight gain caused by antipyschotics.
Cushing's syndrome is a rare condition in which a tumor on an adrenal gland like the pituitary causes excess production of the hormone ACTH. Excess ACTH, in turn, causes the body to produce too much of the stress hormone cortisol. Patients with Cushing's suffer from severe cardiovascular and metabolic disease that can be fatal.
FDA approved Korlym to control high blood sugar levels in adults with Cushing's. The drug works by preventing cortisol from binding to its receptor thereby blunting cortisol's effects on the body. Korlym does not decrease levels of cortisol in the body.
Corcept also sought approval for Korlym to treat hypertension in Cushing's patients but FDA rejected that claim.
I previously predicted an FDA rejection for Korlym -- a call that obviously went wrong. My biggest mistake was probably under-estimating the significance of Cushing's being a rare, life-threatening disease with no current treatment options. Korlym causes significant side effects but the drug is also well understood by FDA (the active ingredient is mifepristone also known as the "abortion pill" RU-486) and the benefits in this vulnerable Cushing's patient population outweigh the risks. I didn't think through the risk-benefit equation for Korlym well enough.
I also placed too much emphasis on a change in Corcept's risk factors (disclosed in the company's SEC filings) that warned of FDA possibly requiring additional pre-approval requirements for Korlym in Cushing's. In the past, changes like this made to a company's SEC filings have proven to be reliable indicators of trouble, but not this time.
--Written by Adam Feuerstein in Boston.
>To contact the writer of this article, click here: Adam Feuerstein.

Saturday, February 18, 2012

There is No Reasoning with the Unreasonable

My New Life as a Cushie Non Grata
Ever have one of those weeks that convinces you every planet must be in retrograde? Welcome to my world. This past week was a doozy for me.

With perspective being the name of my game in 2012, I remember how I vowed just six weeks ago to focus my energies.  I needed time and the New Years resolution to help me focus on myself, not others. I decided to focus my energies towards what I considered the most importants things in my own life -- my family, goals, wishes, desires, and of course, my health.  

Without detailing all the changes swirling around which are bringing me just what I want in 2012, I am proud to say that I have made progress on several fronts.

Then BOOM. The floor drops out from underneath me. Not once. Not twice. Three times. Big seismic shifts in my medical life.

Through the tears of hurt, misunderstanding, and devastation, I have done a lot of soul-searching.
I am reminded of one of my favorite cartoons about the internet, social media, blogs, and message boards -- any and all outlets that let us interact with those 'like' us or who share a common interest, philosophy, or way of being.

Image

MediaTapper.com's brilliant piece analyzing the cartoon of the same name: Someone is Wrong on the Internet is so well written I won't attempt to resummarize.  

I will admit that I laugh every time I see this.  I nod in recognition.  I know that person in the desk chair. She lives occasionally in my home, too. She and I share a seat sometimes, late at night, as my cortisol surges and keeps me awake, surfing the internet, desperate to connect with those like me.

I see her spirit seize those I see through my computer screen much too often, as they become hell bent on setting all manners, dignity and self-respect aside in an attempt to prove that you are the wrong-doer. They confront for sport (or to win JERK points at the JERK store, for you Seinfeld fans), saying things I am pretty sure they would never muster the courage to say in a face-to-face encounter.

I am reminded too often that the internet brings out that sinister side of human nature that can't leave well enough along, that won't let up until they see you suffer. It's a very ugly, dark, nasty side.

When I started this blog in May 2008, I never dreamed I would say the following:

Since this is the only place where I can say what I want without fear of being deleted or outvoted by the committee of prevailing opinions, let me take a moment to be very clear.

I do not want to be that person in the desk chair.
I am no longer that person in the desk chair.
I will not let anyone goad me into being that person in the desk chair.  
I assure you.
I will not let them turn me into that person in that desk chair.
I won't let that be me.

I realized this online debating thing could be a problem for me a long time ago. Faced with fear and armed with odd symptoms, tears but always a little hope, I started communicating others who suffered with the same disease I thought I had almost five years ago.  Through the years, the community and many individual members have saved my life with compassion and knowledge. I will always be thankful to so many.  However, every third triumph was accompanied with a subtle stumbling block, something I had to "get over."  Over time, I noticed triumphs mixed with veiled sarcasm, well-masked ill intentions, words-as-daggers, and group consensus.

Undeterred, I fought though struggled to keep my place in a community of those like the 'new' me--the sick me. This always baffled my husband, whose spent many hours listening to my woes and fears of not belonging.

Why bother with all that? Stay here close to me, he said. We will figure it out. We will get through this together.

With this seed planted in my mind, our own Cushing's experiences provided footing in an unfamiliar world. Fears of belonging and falling were soon replaced with balance and moderation. Shhhh, don't tell my husband, but in secret, I would continue to daily struggle to belong.

Slowly but surely, I did more of what I didn't think I could do. I felt myself being reabsorbed into the family that I was trying to build and sustain despite Cushing's. It is my family in my home, I realized, that I needed to sustain me through this medical journey.

This week, my little engine that could life-modification project got a violent shove into priority slot # 1 this week. Without notice, without any chance to clarify, I would come to find out that 1) my services were no longer needed and 2) services are no longer available to me. My patient life, experience sharing, community of support -- all deleted.


Dumbfounded. Betrayed. Rejected. Misunderstood. Mischaracterized. Overwhelmed. Hurt. Disappointed. Powerless. And yet Relieved.

I have proudly moved away from the desk, back into my life, and when my cortisol is not too high at night, even back into bed

* * * * * * * * *

There is no reasoning with the unreasonable.

It may take a little bit of time to sink in through any fears of reputation-tainting. So it bears repeating. 

There is no reasoning with the unreasonable.

* * * * * * * * *

Social Media in Moderation, I welcome you!

I must accept the positives it brings into my life -- connecting with my family and friends all over the world and sharing information about Cushing's with you readers, old and new.  While I regret missing announcements (surgeries, falls, adrenal crises, reoccurences), I know I must be remain positive, move forward, and use the internet in a way that feeds my soul, not bleeds it. I can, more importantly, reject any of the negative that it brings my way.  

This works for me as a Cushie, and it makes sense for anyone who is trying to surround themselves with folks that lift them up, not tear them down. 


Grab those around you that you want to take on this journey called life. Embrace them and say, Listen buddy, you are coming with me! Make sure they always know you care.  Leave behind all the rest to gather dust in a closed chapter in the story of your life. Move on and build new memories.

It is my hope that you consider this as important of any experience I've shared with you over the years.

For we Cushies--determined, willful, courageous beautiful Cushies--should not reserve one modicum of space for unwarranted stress in our life.

May you stand strong when good decisions are made for you.  ~Melissa

Friday, February 17, 2012

FDA approves first medication for Cushing's patients

This is excellent news for all my fellow Cushies whose excess cortisol led to type 2 diabetes.  I remain uncured with persistent cushing's disease.
Other medications are expected in 2012, but each has great risks. Hopefully, with this many pharmaceutical companies working at it, something useful will stick. I don't know how long folks like me can wait. It has been five long years already.
-- melissa


FDA approves Korlym for patients with endogenous Cushing’s syndrome
Today, Korlym (mifepristone) was approved by the U.S. Food and Drug Administration to control high blood sugar levels (hyperglycemia) in adults with endogenous Cushing’s syndrome. This drug was approved for use in patients with endogenous Cushing’s syndrome who have type 2 diabetes or glucose intolerance and are not candidates for surgery or who have not responded to prior surgery. Korlym should never be used (contraindicated) by pregnant women.
Prior to FDA’s approval of Korlym, there were no approved medical therapies for the treatment of endogenous Cushing’s syndrome.
Endogenous Cushing’s syndrome is a serious, debilitating and rare multisystem disorder. It is caused by the overproduction of cortisol (a steroid hormone that increases blood sugar levels) by the adrenal glands. This syndrome most commonly affects adults between the ages of 25 and 40. About 5,000 patients will be eligible for Korlym treatment, which received an orphan drug designation by the FDA in 2007.
Korlym blocks the binding of cortisol to its receptor. It does not decrease cortisol production but reduces the effects of excess cortisol, such as high blood sugar levels.
The safety and efficacy of Korlym in patients with endogenous Cushing’s syndrome was evaluated in a clinical trial with 50 patients. A separate open-label extension of this trial is ongoing. Additional evidence supporting the agency’s approval included several safety pharmacology studies, drug-drug interaction studies and published scientific literature. Patients experienced significant improvement in blood sugar control during Korlym treatment, including some patients who had marked reductions in their insulin requirements. Improvements in clinical signs and symptoms were reported by some patients.
The most common side effects experienced by endogenous Cushing’s syndrome patients treated with Korlym in clinical trials were nausea, fatigue, headache, arthralgia, vomiting, swelling of the extremities, dizziness and decreased appetite. Other side effects of Korlym include adrenal insufficiency, low potassium levels, vaginal bleeding and a potential for heart conduction abnormalities. Certain drugs used in combination with Korlym may increase its drug level. Health care professionals must be aware of the potential for drug-drug interactions and adjust dosing or avoid using certain drugs with Korlym.
Korlym should never be used by pregnant women. Although pregnancy is an extremely rare occurrence in Cushing’s syndrome patients because of the suppressive effect of excess cortisol on female reproductive function, Korlym will carry a Boxed Warning advising health care professionals and patients that the therapy will terminate a pregnancy.
The FDA has determined that a Risk Evaluation and Mitigation Strategy (REMS) is not necessary for Korlym to ensure that the benefits outweigh the risks for patients with endogenous Cushing’s syndrome. Several factors were considered in this determination including the following:
  • There are no other approved medical therapies for this debilitating form of Cushing’s syndrome and very sick patients would suffer if impediments to access were imposed.
  • The number of Cushing’s syndrome patients who will require treatment with Korlym is small, with an estimated 5,000 patients being eligible for treatment.
  • The number of health care professionals in the United States who would potentially prescribe Korlym is very small and highly specialized. They are familiar with the risks of Korlym treatment in the endogenous Cushing’s syndrome population and frequently monitor patient status.
  • The risks of Korlym treatment in the intended population can be managed through physician and patient labeling. The risks associated with Korlym will be outlined in a medication guide for patients.
The company has voluntarily proposed distributing Korlym through a central pharmacy to ensure the timely, convenient and appropriate delivery of the drug to Cushing’s patients or to the health care institutions where this therapy may be initiated. Most retail pharmacies are unlikely to keep adequate supplies of the drug for this rare condition and central distribution will give patients with Cushing’s syndrome better access to Korlym.
Korlym is manufactured by Corcept Therapeutics of Menlo Park, Calif.
For more information:
The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

FDA NEWS RELEASE

For Immediate Release: Feb. 17, 2012Media Inquiries: Morgan Liscinsky, 301-796-0397; morgan.liscinsky@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

Saturday, February 11, 2012

Pituitary Surgery & Awesome Diagrams

I never tire of reading about pituitary surgery. Having done it twice, I am still fascinated with the process. Recently, fellow Cushie Joann brought a new page to my attention. 

Mayfield Clinic has created an outstanding, easy-to-understand document for pituitary patients. You can also download the pdf, too.

Pituitarysurgery_figure1
 

After reviewing the multiple diagrams of the pituitary smack dab in the middle of the skull, I am reminded of others who diminish the severity of pituitary surgery.  They claim that pituitary surgery is not really brain surgery. The debate swirls among Cushies in the Cushing's community.  For me, it is very clear.  I have always been pretty outspoken that it is brain surgery. 

Pituitarysurgery_figure3a

Let's review some basic facts. 

First, the brain is protected by the cranium because the brain is so important to the body's function. In the same way, the sella turcica, a bony little saddle where the pituitary sits, protects its passenger in the same way, for the same reason. Do you see my point?  Yes, thank you. 

Second, the neurosurgeon must drill a hole through the sella turcica to gain access to the pituitary.  If anyone is drilling anything in your skull to remove a tumor, I call this brain surgery!

Third, the American Brain Tumor Association lets us pituitary patients in the club. So does the National Brain Tumor Foundation.  Why would anyone really begrudge us?

Pituitarysurgery_figure3b

Lastly, did you see how central the pituitary is to the brain? It is smack dab in the middle:  halfway between the ears, halfway between the nose and back of the head.  

Folks, really.  If you can't see how this is all taking place in the brain, I really can't make you see it any clearly.  I am all for facts, but sometimes, there is just no helping someone see what is right there at the top of the nose (internally).  

~Moxie Melissa

Wednesday, February 1, 2012

Share your story. Shape the future of Cushing's research and treatment.

** Please contact Corcept no later than Wednesday, 2/8/12. **

People with persistent Cushing’s Syndrome are invited to participate in market research and give input to the creation of patient information, tools, and resources. 

People with Cushing’s Syndrome (Cushing’s Disease, ectopic Cushing’s and adrenal Cushing’s) are invited to participate in market research and give input into the creation of patient information, tools, and resources. 

Patients are not eligible to participate if: 
  • you were diagnosed more than 10 years ago (memory fades with time!)
  • you have had a bilateral adrenalectomy
  • you are in remission 
This market research will be conducted in a confidential, one-on-one interview that can take place over the phone or in-person in a central location near you. If you are interested in a phone interview or in-person interview, please contact Clair Carmichael Johnstone at cushing@compasshc.com or call (800) 856-6706. More information (including cities and locations for in-person interviews) will be provided on the phone. Those who participate in an in-person interview will be compensated $250 and those who choose a phone interview will receive $125 for their time. Thank you in advance!

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I spoke with Clair earlier this week. She was very supportive, and she is a great listener. Contact her today!


Melissa 


 

 

Monday, January 16, 2012

Saturday, January 7, 2012

The Internet Rescues A Family

I usually stick to Cushing's stories, but this one really tugged at my heart. Online relationships can be real, valuable, substantial, and irreplaceable. I don't even want to think about what would have become of me without the guidance, support, and love from Cushing's patients I've met in the past years. Thank you to all y'all.

LISA BELKIN: The Internet Rescues A Family
If you've been tempted to dismiss the internet as superficial and soulless, and online relationships as a poor imitation of real ones, you might want to talk to Serge and Monica Bielanko today.

Friday, December 23, 2011

Subclinical Cushing’s syndrome: definition and management

Clinical Endocrinology

Clinical Endocrinology

Volume 76Issue 1pages 12–18January 2012
Terzolo, M., Pia, A. and Reimondo, G. (2012), Subclinical Cushing’s syndrome: definition and management. Clinical Endocrinology, 76: 12–18. doi: 10.1111/j.1365-2265.2011.04253.x

Summary

Subclinical Cushing’s syndrome is an ill-defined endocrine disorder that may be observed in patients bearing an incidentally found adrenal adenoma. The concept of subclinical Cushing’s syndrome stands on the presence of ACTH-independent cortisol secretion by an adrenal adenoma, that is not fully restrained by pituitary feed-back. A hypercortisolemic state of usually minimal intensity may ensue and eventually cause harm to the patients in terms of metabolic and vascular diseases, and bone fractures. However, the natural history of subclinical Cushing’s syndrome remains largely unknown. The present review illustrates the currently used methods to ascertain the presence of subclinical Cushing’s syndrome and the surrounding controversy. The management of subclinical Cushing’s syndrome, that remains a highly debated issue, is also addressed and discussed. Most of the recommendations made in this chapter reflects the view and the clinical experience of the Authors and are not based on solid evidence.
Since the early nineties, the serendipitous detection of clinically inapparent adrenal adenomas has been associated with a state of subtle cortisol excess. First described in case reports, subclinical hypercortisolism was then appreciated as a frequent endocrine disorder, being detected in up to 15–20% of patients with adrenal incidentalomas.1,2 This condition was initially defined as ‘preclinical’ Cushing’s syndrome, but afterward the term ‘subclinical’ entered in use because it does not imply any assumption on the further development of a clinically overt syndrome. The National Institute of Health, State-of-the-Science Conference concluded that a more precise definition should be ‘subclinical autonomous glucocorticoid hypersecretion’ but this never gained widespread acceptance.3 The semantic quarrel underscores the uncertainties about subclinical Cushing’s syndrome that has still been recently labelled as a poorly defined entity.4 In this review, subclinical hypercortisolism and subclinical Cushing’s syndrome will be used synonymously.

Definition of subclinical Cushing’s syndrome

The concept of subclinical hypercortisolism

Subclinical Cushing’s syndrome is a common disorder assuming a frequency of up to 20% in patients harbouring incidentally discovered adrenal adenomas, which are found in approximately 4% of middle-age persons and in more than 10% of elderly population.3,5–7Ascertainment of subclinical Cushing’s syndrome should stand on three criteria: first, the patient bears an adrenal adenoma detected serendipitously without any previous suspect of adrenal disease; second, the patient does not present a clear Cushingoid phenotype; third, the endocrine work-up shows autonomous (ACTH-independent) cortisol secretion.8
As to the first point, the concept of subclinical hypercortisolism may apply also to patients bearing pituitary incidentalomas and patients who are on steroid replacement;8 however, discussion of these conditions is beyond the scope of this review.
The second criterion is elusive depending largely on individual clinical judgment and personal practice. The problem is that Cushing’s syndrome is actually a spectrum of clinical presentations that is hard to categorize, because of a continuous variability from the more severe phenotypes to the milder ones. The less-experienced physician may not recognize (mild) signs of hypercortisolism, such as facial fullness that can be identified only after a careful assessment of the patient’s photographic material. Thus, what is subclinical for a given physician may actually be obvious for another one. The patients with ‘true’ subclinical Cushing’s syndrome should present only clinical features that are less specific for cortisol excess and are of common observation in the context of the metabolic syndrome (i.e. central obesity, hypertension).
The third point suffers from the inadequacy of current tests to detect minimal cortisol excess. Studies may demonstrate that average results of a specific test are able to differentiate patients with adenomas secreting cortisol autonomously from patients with nonfunctioning adenomas. However, there is considerable overlap between the different categories and it is usually difficult to qualify an individual patient, unless his or her results fall in the extreme ends of distribution. In this context, cortisol secretion ranges from nonfunctioning adrenal adenomas, to adenomas producing cortisol in overt excess with a manifest clinical phenotype, with adenomas associated with minimal cortisol excess and subclinical Cushing’s lying between these extremes. Thus, there is no clear dichotomy between normal and abnormal cortisol secretion, and the process of setting thresholds associated with various outcomes is arbitrary, being related, either implicitly or explicitly, to personal preferences rather than solid evidence.3,8–10
In Table 1, we compared subclinical and mild Cushing’s syndrome; in general, patients with subclinical Cushing are older, more frequently of male gender and bearing an adrenal instead of pituitary adenoma when compared to patients with mild Cushing’s. These differences result from comparison of average data and are of limited help when evaluating an individual patient. The clinical presentation is somewhat different, because the condition is recognized serendipitously in one case and following clinical suspicion in the other, and the specific signs of cortisol excess11 should not be present in the subclinical variant. Having said this, we have to admit that it is difficult to set precise boundaries separating patients with a mild phenotype from patients with a nonspecific phenotype. Only personal experience and clinical experience may help differentiating, as an example, a slight facial fullness caused by mild cortisol excess from facial roundness associated with obesity. There is also a great overlap in the biochemical presentation, even if endocrine alterations are generally more consistent in mild Cushing’s syndrome where ACTH-independent disease is less frequent.
Table 1.   Comparison of subclinical Cushing’s syndrome and mild Cushing’s syndrome.
Subclinical CushingMild Cushing
  1. UFC, urinary free cortisol; MSC, midnight salivary cortisol; DST, dexamethasone suppression test.
  2. *For definition of specific Cushingoid signs refers to reference.11

Thursday, December 22, 2011

Investigational drugs may expand medical treatment of Cushing’s syndrome

We Cushies hope that in 2012, we will see success as more patients to try these drugs. 

As you know, my pituitary continues to produce excess ACTH, a hormone that causes my Cushing's. Even after two tumors were removed during two pituitary surgeries, abnormal cells persist. Medication may be a real possibility for Cushies like me. If medication can stop this ACTH production, there will be no need for a life-changing bilateral adrenalectomy (BLA).  Click here to see the December 2011 cover story for Endocrine Today.


Investigational drugs may expand medical treatment of Cushing’s syndrome

Endocrinologists face many challenges when treating patients with Cushing’s syndrome. Diagnosis can be difficult because many of the disease’s characteristics, such as obesity, depression and hypertension, are also common in the general population.

Treating the disease presents hurdles as well. With its potential for total cure, transsphenoidal surgery remains the first-line treatment. However, the problems of achieving permanent remission in all cases demonstrate the need for medical therapies for this condition.

Laurence Katznelson, MD

Laurence Katznelson, MD, of Stanford University, Hospital and Clinics, said pasireotide could possibly prevent pituitary tumor growth and promote tumor shrinkage in patients with Cushing’s syndrome.

Photo by:
Steve Gladfelter,
Visual Arts at Stanford University

Currently, endocrinologists use several medical therapies to treat hypercortisolism, although none have FDA approval for that particular indication. Two new investigational drugs — mifepristone (Korlym, Corcept Therapeutics) and pasireotide (SOM230, Novartis) — have the potential to meet those unmet needs, according to experts interviewed by Endocrine Today.

“Recently completed research studies, which involved innovative medical therapeutic strategies that target the corticotroph adenoma itself or block the effects of cortisol in the periphery, should bring new treatment options in the future,” Maria Fleseriu, MD, associate professor, director of the Northwest Pituitary Center at Oregon Health & Science University, said in an interview.

Manufacturers of both new medications have submitted new drug applications to the FDA. Corcept expects to hear from the FDA on Feb. 17, according to a spokesperson for the company.

Mifepristone has a unique mode of action in that it blocks the cortisol receptor, Robert L. Roe, MD, president of Corcept Therapeutics, said in an interview.

“With that receptor blocked, many of the problems associated with Cushing’s syndrome can be greatly improved, including: obesity, diabetes, insulin resistance, high blood pressure, quality of life and depression,” Roe said.

The SEISMIC trial, a 24-week, multicenter, open-label study, included 50 patients with persistent or recurring Cushing’s disease, metastatic adrenal cortical carcinoma or ectopic adrenocorticotropic hormone (ACTH) syndrome that was not amenable to surgery, according to Fleseriu, who was an investigator on the study. There were two primary endpoints: blood sugar improvement in patients with glucose intolerance and an improvement in BP in patients with a diagnosis of hypertension but without abnormal blood sugar levels. The key secondary endpoint looked for global clinical improvement as determined by a three-member independent data review board.

Results from the phase 3 study showed that, overall, mifepristone yielded significant clinical and metabolic improvement in patients with refractory Cushing’s syndrome, Fleseriu said. Of the glucose-intolerant patients, 60% responded, and BP improved in 38% of patients. The global clinical endpoint was positive in 87% of patients, Roe said.

Maria Fleseriu, MD
Maria Fleseriu

“In addition, out of 34 patients who completed the main study, 30 elected to continue in the long-term extension study,” Fleseriu said.

She said mifepristone “offers a new approach for the treatment of Cushing’s syndrome that [has] failed other therapies. Keeping in mind that biochemical parameters will not be available for monitoring these patients, close clinical observation is recommended.”

Yet, there are aspects of mifepristone that are still unknown.

“There will be a learning curve with this drug on how to dose it and use it properly to get a good response,” said James Findling, MD, professor of medicine, Endocrinology Center and Clinics, Medical College of Wisconsin, Milwaukee, who was the principal investigator of the study.

James Findling, MD
James Findling

Also on the horizon is the investigational agent pasireotide, a multiligand somatostatin analogue with a high affinity for the somatostatin receptor type 5, which is often expressed by corticotroph adenomas in Cushing’s disease. Pasireotide blocks the secretions from ACTH-secreting pituitary tumors.

“Pasireotide works by attacking the pituitary tumor to reduce the ACTH level,” according to Laurence Katznelson, MD, professor of medicine and neurosurgery at Stanford University and medical director of the pituitary program at Stanford Hospital and Clinics. “Possibly, this drug could prevent tumor growth or lead to tumor shrinkage, although we await data to support that.”

Results of the multicenter, phase 3 PASPORT-CUSHINGS trial, presented at the Endocrine Society’s 93rd Annual Meeting & Expo in June, included 162 patients with persistent/recurrent or newly diagnosed Cushing’s disease who were ineligible for surgery. Researchers randomly assigned participants to receive twice-daily subcutaneous pasireotide injections of 600 mcg or 900 mcg. The primary endpoint was urinary-free cortisol levels at 6 months without dose up-titration.

Of the patients in the 900-mcg dose group, 26.3% had normal urinary-free cortisol levels at 6 months; at 12 months, 25% maintained normal levels. The median reduction from baseline in urine-free cortisol after 6 months of treatment was 47.9% for both dose groups.

The researchers noted significant clinical benefit in most patients, including lower BP and total cholesterol, as well as weight loss, Fleseriu said.

“It is noteworthy that while urinary-free cortisol normalization was seen in just a subset of patients, the rate of normalization was higher in patients with lower baseline urinary-free cortisol, making it, in my opinion, an attractive treatment for patients with mild elevations in urinary-free cortisol,” Fleseriu, who was also an investigator for this trial, told Endocrine Today.

Pasireotide was well tolerated in the studies, she added.

“Adverse events were comparable to the other somatostatin analogues, with the exception of a much higher incidence of hyperglycemia,” Fleseriu said. “Patients treated with this drug will require strict monitoring and prompt treatment of hyperglycemia.” The reasons for hyperglycemia are related to inhibition of insulin release from the pancreas by this multiligand somatostatin analogue. The type 5 receptor is abundant on pancreatic insulin secreting cells of the pancreas.

Timely diagnosis, treatment critical

Cushing’s syndrome is the result of chronic exposure to high levels of cortisol. Cortisol, typically released in stressful situations, controls how the body uses carbohydrates, fats and proteins. In addition, it helps decrease the immune system’s response to inflammation.

Untreated, Cushing’s syndrome can have serious consequences, including significant mortality and morbidity. Timely diagnosis and appropriate treatment are critical for this rare disorder, according to Fleseriu, who is also associate professor of medicine/endocrinology and neurological surgery at Oregon Health & Science University.

The endocrinologist uses the following tests to diagnose the disorder: 24-hour urinary-free cortisol levels; late-night salivary cortisol measurements; and low-dose dexamethasone suppression test.

After making the diagnosis of hypercortisolism, the next step is to determine the cause of excess cortisol secretion. There are several tests available for this purpose: corticotropin-releasing hormone (CRH) simulation test; direct radiologic visualization of the pituitary and adrenal glands; and inferior petrosal sinus sampling for ACTH.

The most common cause is long-term synthetic steroid use to treat inflammatory illnesses such as asthma or rheumatoid arthritis, according to Katznelson. In these cases, gradually reduction of the glucocorticoid will reverse the disorder.

Another cause is an ACTH-secreting pituitary adenoma. The excess stimulates the adrenals to produce and secrete excess cortisol release, Katznelson said. This is also known as Cushing’s disease.

Pituitary adenomas are responsible for 70% of Cushing’s syndrome cases, according to information from the National Institute of Diabetes and Digestive and Kidney Diseases.

Surgery is first-line treatment

John Carmichael, MD
John Carmichael

First-line therapy for Cushing’s disease is transsphenoidal adenomectomy, in which the surgeon approaches the pituitary through the nose and, using either a microscope or endoscope by trained neurosurgeons, according to John Carmichael, MD, assistant professor of medicine, The Pituitary Center, Cedars-Sinai Medical Center, Los Angeles.

The procedure boasts an excellent cure rate.

“In good hands, with a small tumor, you can get cure rates of about 85%,” Carmichael said. “It depends on a number of factors: the skill of the surgeon, the size of the tumor and the level of invasiveness.”

If surgery is curative, the patient will require cortisol replacement.

“Once you remove the tumor, the normal tissue has been suppressed by the activity of the tumor for so long that it takes a long time for patients to recover and start making cortisol on their own,” Carmichael said. “It can take as long as 6 to 12 months for patients to completely recover their normal cortisol secretion once they’ve been cured.”

David M. Cook, MD
David M. Cook

However, the surgery is associated with risks, including bleeding and infection, although they are “pretty rare,” according to Carmichael. One of the most common risks is a pituitary injury that can cause diabetes insipidus, which is almost always transient. Other postoperative problems include possible cerebrospinal fluid leaks and the possibility of recurrence, said David M. Cook, MD, an endocrinologist in the department of medicine, Oregon Health & Sciences University.

Sometimes the tumor is hard to find during the first surgery, Katznelson said.

“The problem is, in 40% to 50% of patients who have Cushing’s disease, the tumor is very small, if not almost invisible, on the MRI scan,” he said. As a result, the surgeon may remove normal gland or possibly the entire pituitary, resulting in hypopituitarism. The patient would require hormone replacement and would still have Cushing’s syndrome.

Radiation is a possible treatment for these cases.

“The role of radiation is in the patient who has already had surgery for Cushing’s syndrome. The tumor is visible but cannot be completely removed. Radiation is most useful when there is a target to irradiate,” Katznelson said, adding that even in these cases, radiation cannot promise 100% efficacy.

Unfortunately, radiation takes a significant amount of time to work.

“People are a little reluctant to use radiation because it takes years to help,” Cook said. “It is not curative and patients can relapse from radiation also; it is not foolproof.”

Ectopic ACTH syndrome

Sometimes, tumors located outside the pituitary can produce ACTH, resulting in the ectopic ACTH syndrome. The tumors are usually malignant. In more than half of the cases, the tumors are found in the lungs, according to information from the NIDDK.

“You would need surgery in that location to get rid of the tumor,” Carmichael said.

If an adrenal tumor is stimulating an overabundance of cortisol, the definitive cure is adrenalectomy.

“If we do adrenalectomy, all of the [symptoms of] Cushing’s syndrome go away, but the primary pituitary tumor, which may have been microscopic, can start to become more aggressive and grow and become more difficult to treat in the long run,” Katznelson said. “That is Nelson’s syndrome.”

The adrenal insufficiency that follows adrenalectomy is serious, Cook said.

“It is dangerous to not have your adrenals; it is the most dangerous disease that endocrinologists treat,” he said. “A number of sudden deaths have been reported in patients without adrenals.”

Katznelson also said that managing these patients can be challenging.

“Management of primary adrenal insufficiency is sometimes difficult, because not only does the patient lack cortisol, but will also lack aldosterone, which is important for maintaining electrolytes and volume status,” he said. “Patients often find it quite challenging to manage primary adrenal insufficiency.”


Fast Facts


Medical therapies for Cushing’s syndrome

Besides surgery and radiation, endocrinologists can use several medical therapies to treat Cushing’s syndrome; however, to date, none has obtained FDA approval to treat the disorder.

The medical treatment used most often in the United States is ketoconazole, an antifungal agent that blocks the enzymes in the adrenal glands that produce steroids, Findling toldEndocrine Today.

Ketoconazole, administered two to three times daily, is generally successful.

“It is an effective therapy,” Findling said. “Probably 50% to 70% of patients will have a response.”

However, this drug is not the optimal choice for long-term use.

“Ketoconazole has been associated with some toxicity; liver function abnormalities can occur and, in fact, liver failure can occur,” he said.

Another medical treatment option is mitotane (Lysodren, Bristol-Myers Squibb), which blocks adrenal steroid enzymes, Findling said. This toxic agent takes considerable time to work; in fact, it may require roughly 3 or 4 months for cortisol levels to normalize. It is used rarely in the United States.

“Mitotane has a limited future as a therapy for Cushing’s syndrome, except for in patients who have adrenal cancer, at least in the US,” Findling said.

Metyrapone (Metopirone, Novartis), another agent, effectively blocks adrenal steroid enzymes; however, it is not commercially available in the United States, Findling said.

Etomidate is an anesthetic agent that also inhibits adrenal steroidogenesis and is employed successfully in patients with very severe hypercortisolism who are not ready for surgery.

“If etomidate were available in a pill, it would be an excellent medical treatment for Cushing’s syndrome,” Findling said. “With subhypnotic doses, etomidate lowers the cortisol level smoothly down into the normal range. … It is well tolerated, but has to be given as a continuous IV infusion, so it is not practical.”

All of these medications have severe adverse effect profiles, according to Carmichael.

No replacement for surgery … yet

Although mifepristone and pasireotide show some promise as treatments for Cushing’s syndrome, it is not time to put the scalpels in storage, the experts said.

“Neither of these drugs, at least for the foreseeable future, will replace surgical treatment of Cushing’s syndrome,” Findling said. “Like most disorders, if you have a surgical procedure that will resolve the endocrinopathy and restore normal hormonal function, it is usually the treatment of choice.”

However, these medications are a welcome addition to the armamentarium, Carmichael said.

“It remains to be seen exactly what their place will be and how they will be best used. But, certainly, in cases where surgery is not an option or where you need to control the disease in someone who has very severe disease, they would have a role,” he said. Currently, Carmichael sees medical therapy as an adjuvant treatment, which would follow surgery if it was not curative. Also, endocrinologists may use them in place of surgery if surgery was not an option.

“There is a lot more room for work,” Carmichael said. “The ideal paradigm of having a medication that is safe and controls the disease and in a sense would replace surgery would be an ideal goal, but we are certainly not there yet.”– by Colleen Owens

For more information:

  • Colao A. OR09-6. Presented at: The Endocrine Society 93rd Annual Meeting & Expo; June 4-7, 2011; Boston.
  • Fleseriu M. [OR09-5] Mifepristone, a glucocorticoid receptor antagonist, produces clinical and metabolic benefits in patients with refractory Cushing syndrome: results from the Study of the Efficacy and Safety of Mifepristone in the Treatment of Endogenous Cushing Syndrome (SEISMIC). Presented at: The Endocrine Society 93rd Annual Meeting & Expo; June 4-7, 2011; Boston.
  • Gross BA. Neurosurg Focus. 2007;23:E10.
  • National Institute of Neurological Disorders and Stroke. NINDS Cushing’s syndrome information page. Available at:www.ninds.nih.gov/disorders/cushings/cushings.htm.
  • National Endocrine and Metabolic Diseases Information Service. Cushing’s syndrome. Available at:www.endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx#causes.

Disclosures: Dr. Fleseriu is principal investigator in multiple Cushing’s trials and past consultant for Novartis; she is also the principal investigator on Corcept Cushing’s trials. Dr. Findling is a paid consultant for Corcept Therapeutics. The other doctors in this article did not report any relevant financial disclosures.


POINT/COUNTER
Which is the most reliable screening method for Cushing’s syndrome?

POINT

Tests are equally accurate, but have limitations

The diagnosis of Cushing’s syndrome is problematic. It is one of the most difficult endocrine diseases to diagnose. Diagnosis includes assessing the symptoms and signs of Cushing’s syndrome because the symptoms and signs overlap with common disorders, including obesity, depression and polycystic ovary syndrome. Many patients consult websites in an attempt to find an explanation for their weight gain, fatigue, depression and other symptoms. They ask frequently after a Web search if their symptoms could be Cushing’s syndrome.

Screening tests for Cushing’s syndrome include three different tests: an 11 p.m. or midnight salivary cortisol level; a 24-hour urine free cortisol level; and an 8 a.m. cortisol level after ingestion of 1 mg of dexamethasone at midnight the previous night. How reliable are these tests? They are equally accurate — approximately 90% to 92% reliable, which is actually good for screening tests.

However, all three tests have limitations. Results of the nighttime salivary cortisol test are affected by laboratory accuracy (not all laboratories are equally reliable) and sleep patterns. In severe depression cases, the results may be falsely elevated. The 24-hour urine free cortisol test is an indicator of overall cortisol production. The most accurate method of measurement — tandem mass spectrometry with concomitant measurement of urine volume and urine creatinine — provides a good measure. It may take several 24-hour urine collections to confirm hypercortisolism. The 1-mg overnight dexamethasone suppression test is reliable, but with several caveats. The test is standardized according to administering dexamethasone at midnight and measurement of serum cortisol promptly at 8 a.m. the following day. However, while the patient may have gone to the lab at 8 a.m., the blood sample may have been obtained later, which invalidates the test. Additionally, if the patient is taking medications that alter dexamethasone metabolism, the results may not be valid. The endocrinologist must measure a serum dexamethasone level to confirm the validity of the test.

The diagnosis of Cushing’s syndrome is dependent upon confirming consistent overproduction of cortisol. The diagnosis may require repeated testing and this should be done in any patient in which there is a suspicion of Cushing’s syndrome.

Mary Lee Vance, MD, is professor of medicine and neurosurgery at University of Virginia Health System, Charlottesville, Va.

Disclosure: Dr. Vance reports no relevant financial disclosures.


COUNTER

Late-night salivary cortisol is best initial test

Ty Carroll, MD
Ty Carroll

No test is perfect for all patients. In addition, it is important to remember that some patients will require multiple, different tests to confirm or exclude Cushing’s syndrome. However, that being said, late-night salivary cortisol is the best initial screening for most patients with suspected Cushing’s syndrome.

Late-night salivary cortisol is the most specific test for Cushing’s syndrome. The sensitivity and specificity are very good. Multiple studies have examined late night salivary cortisol testing, and the majority of those studies show sensitivity of more than 95% and a specificity in the range of 90% to 100%. That is comparable to — or better than — other methods to diagnose Cushing’s syndrome.

Also important to note: It is easy for patients to perform late-night salivary testing. Patients are able to do the collection at home and mail in the completed samples to a reference lab, whereas urinary free cortisol and dexamethasone suppression testing can be difficult for some patients to complete. In addition, for the most part, late-night salivary cortisol is not affected by other medications that patients take, unlike dexamethasone suppression testing, which can be affected by several medications that patients often take to treat other conditions.

Ty Carroll, MD, is assistant professor of medicine at Endocrinology Center and Clinics, Menomonee Falls, Wisc.

Disclosure: Dr. Carroll is an investigator in Corcept’s clinical trials of mifepristone.