Signifor® (Pasireotide) is now Commercially Available

Posted on March 13, 2013 by MaryO

November 7, 2012 The US Food and Drug Administration’s (FDA) Endocrinologic and Metabolic Drugs Advisory Committee (EMDAC) voted unanimously in support of the use of Signifor® (pasireotide) for the treatment of patients with Cushing’s disease who require medical therapeutic intervention. The recommendation was based on data from clinical trials of pasireotide, including PASPORT-CUSHINGS (PASireotide clinical trial PORTfolio – CUSHING’S disease), the largest randomized Phase III study to evaluate a medical therapy in patients with Cushing’s disease.

Patient Assistance for SIGNIFOR support for patients includes:
– Therapy-specific support programs for out-of-pocket costs
– Alternative assistance searches and referrals to Federal and State assistance programs
– Referrals to Independent Charitable Foundations for assistance with co-pay costs
– Patient assistance for low-income and uninsured patients

For more information, or to speak to a Patient Assistance NOW Endocrinology representative, please call 1-877-503-3377 (select option #3 for SIGNIFOR) Monday to Friday 8 am – 8 pm ET.

Filed under: Clinical trials, Cushing's, pituitary | Tagged: , , , , , , | 1 Comment »

Early Detection, Treatment Needed To Reduce Risk Of Death, Cardiovascular Disease In Cushing’s Disease Patients

Posted on February 20, 2013 by MaryO

Even after successful treatment, patients with Cushing’s disease who were older when diagnosed or had prolonged exposure to excess cortisol face a greater risk of dying or developing cardiovascular disease, according to a recent study accepted for publication in The Endocrine Society’s Journal of Clinical Endocrinology & Metabolism (JCEM).

Cushing’s disease is a rare condition where the body is exposed to excess cortisol – a stress hormone produced in the adrenal gland – for long periods of time.

Researchers have long known that patients who have Cushing’s disease are at greater risk of developing and dying from cardiovascular disease than the average person. This study examined whether the risk could be eliminated or reduced when the disease is controlled. Researchers found that these risk factors remained long after patients were exposed to excess cortisol.

“The longer patients with Cushing’s disease are exposed to excess cortisol and the older they are when diagnosed, the more likely they are to experience these challenges,” said Eliza B. Geer, MD, of Mount Sinai Medical Center and lead author of the study. “The findings demonstrate just how critical it is for Cushing’s disease to be diagnosed and treated quickly. Patients also need long-term follow-up care to help them achieve good outcomes.”

The study found cured Cushing’s disease patients who had depression when they started to experience symptoms of the disease had an elevated risk of mortality and cardiovascular disease. Men were more at risk than women, a trend that may be explained by a lack of follow-up care, according to the study. In addition, patients who had both Cushing’s syndrome and diabetes were more likely to develop cardiovascular disease.

The study examined one of the largest cohorts of Cushing’s disease patients operated on by a single surgeon. The researchers retrospectively reviewed charts for 346 Cushing’s disease patients who were treated between 1980 and 2011. Researchers estimated the duration of exposure to excess cortisol by calculating how long symptoms lasted before the patient went into remission. The patients who were studied had an average exposure period of 40 months.

The findings may have implications for people who take steroid medications, Geer said. People treated with high doses of steroid medications such as prednisone, hydrocortisone or dexamethasone are exposed to high levels of cortisol and may experience similar conditions as Cushing’s disease patients.

“While steroid medications are useful for treating patients with a variety of conditions, the data suggests health care providers need to be aware that older patients or those who take steroid medications for long periods could be facing higher risk,” Geer said. “These patients should be monitored carefully while more study is done in this area.”

From http://www.medicalnewstoday.com/releases/256284.php

Filed under: Cushing's, Health Care, pituitary | Tagged: , , , , , , , , , | 2 Comments »

Cushing’s on the Dr. Oz Show!

Posted on December 19, 2012 by MaryO

More than 150 staff members will receive the BRAVO! Team Values in Action Award for their collaborative efforts when The Dr. Oz Show came to videotape an inspirational patient story at Ohio State’s Wexner Medical Center.

Lori Burkhoff (Cushings-Help board member cmondwn), a 34-year-old mother from Long Island, NY, who came to Ohio State seeking a cure for Cushing’s disease, will be featured on The Dr. Oz Show along with Neurosurgeon Daniel Prevedello, MD, and Otolaryngology (ENT) Surgeon Ricardo Carrau, MD.

With only four days notice, staff members at Ohio State’s Wexner Medical Center and James Cancer Hospital and Solove Research Institute collaborated to make this visit a success for all — the patient and The Dr. Oz Show video crew.

Along with Collaboration, the Ohio State team also demonstrated the values of Leadership and of Acting with Integrity and Personal Accountability, as they worked to ensure the patient’s safety while accommodating the video crew.

Staff directly involved with this project spanned a broad spectrum of departments, including Admissions, Ambulatory Surgical Unit, Anesthesiology, Housekeeping, Pre-Op, Operating  Room, PACU/Post-Op/ Recovery, In-patient recovery on 7 East James, Marketing and Strategic Communications, Nutrition Services, Patient Experience, Security, and Media Relations.

Each year, our Media Relations team routinely handles hundreds of media escorts and requests for interviews with our expert staff members. But there was nothing routine about this media request. For starters, TV celebrity Dr. Oz would be on site for the entire shoot, starting at 5:30 a.m. Sept. 17, chronicling Burkhoff’s efforts to be cured of a debilitating disease she has battled since she was a teenager. Media Relations staffers escorted the crew throughout the visit.

Cushing’s disease is caused by the pituitary gland releasing too much adrenocorticotropic hormone (ACTH).  People with Cushing’s disease accumulate an excessive amount of ACTH, and this stimulates the production and release of cortisol, which is a stress hormone. If left untreated, Cushing’s disease can cause severe illness and even death.

In Burkhoff’s case, despite three previous surgeries to remove benign tumors on or near her pituitary gland, the disease had returned with a vengeance, causing her to gain weight and putting her at risk for diabetes, stroke, high blood pressure and heart disease, among other complications.

In an effort to raise awareness about the often-misdiagnosed Cushing’s disease, Burkhoff had contacted The Dr. Oz Show.

In the meantime, she learned about the innovative surgical procedure performed at Ohio State. Burkhoff met with Prevedello, the Ohio State neurosurgeon who works in tandem with ENT surgeon Ricardo Carrau, to perform endoscopic endonasal surgery. This is a minimally invasive neurosurgical technique that gives surgeons access to the base of the skull, intracranial cavity and top of the spine by operating via the nose and paranasal sinuses.

Prevedello is one of only a few neurosurgeons worldwide trained in this approach that leaves no facial incisions or scarring, causes less trauma to the brain and nerves, has fewer side effects and results in quicker recovery times.

Burkhoff and the surgeons agreed to be videotaped “documentary style” — meaning that Dr. Oz wanted to capture everything that happened to Burkhoff leading up to and including her surgery. Cameras were rolling at 6 a.m. when Dr. Oz warmly greeted Burkhoff as she walked through the main lobby doors of Rhodes Hall.

Dr. Oz and his video crew remained with Burkhoff as she was admitted to the hospital and during a pre-op discussion with her surgeons in the Ambulatory Surgical Unit. They were with her during the 2.5-hour surgery in University Hospital OR 16, and they followed her into the Post Anesthesia Care Unit recovery area after surgery. By noon, Dr. Oz had departed and the video crew had called it a “wrap.”

During the surgery, Prevedello removed two benign tumors near the pituitary gland. However, Burkhoff did not respond as well as doctors had hoped.

Within a few days, Prevedello and Carrau decided to schedule an unprecedented fifth surgery on Sept. 22.

Even though Dr. Oz couldn’t make it back for the fifth and final surgery, his video crew arrived at 6 a.m. on a football home-game Saturday. The crew interviewed Burkhoff and the surgeons before the four-hour surgery, and the surgeons again after the operation. This surgery proved successful, and Burkhoff continues to improve.

Prevedello and Carrau, members of Ohio State’s Cranial Base Center, will join Burkhoff on the set of The Dr. Oz Show in New York City to share her inspirational story with an international audience during an episode slated to air on Thursday, December 20, 2012.

 

More information at http://oncampus.osu.edu/pdf/Insight10-18-12.pdf

Filed under: Cushing's, pituitary | Tagged: , , , , , , | 1 Comment »

Magic Foundation Cushing’s Conference, 2013

Posted on November 30, 2012 by MaryO

Dates:
Friday, April 19, 2013 – Registration and exhibits-4 PM to 9 PM

Saturday, April 20, 2013 – Educational segments

Sunday, April 21, 2013 – Educational Segments

Monday, April 22, 2013 – Departure or visiting sites of Las Vegas

Registration: $155 for members $190 for non-members (includes 1 yr membership)

Registration fee includes: Thursday exhibits and refreshments, Friday continental breakfast, and lunch and Saturday continental breakfast and lunch. An optional dinner will be held on Friday night for $25.00 per person.

For additional attendees in your family there will be no registration fee but a $75 charge for inclusion of the segments and meals. (optional dinner on Friday night not included in the $75 fee)

Accommodations:
Tuscany Suites & Casino (Just off the Las Vegas Strip)

255 East Flamingo Rd

Las Vegas, NV

Guest room costs:

Friday and Saturday $105 per guestroom, single or double occupancy ($117.60 w/tax)

Sunday thru Thursday $65 per guestroom, single or double occupancy ($72.80 w/tax)

Reservations made after March 20, 2013 at noon will be charged the prevailing room rate if accommodations are available. To book your room you must call Tuscany Room Reservations, 877-887-2261 and ask for MAGIC Foundation group rates. You will be required to provide a major credit card for the first night’s room and tax deposit, which will be charged in order to guarantee accommodations.

Filed under: Cushing's, pituitary | Tagged: , , , , | Leave a comment »

A Quarter of a Century

Posted on November 3, 2012 by MaryO

I had my one, and only, pituitary surgery on this date in 1987.  Of course, I was trying to get a diagnosis for several years before that.

I know it’s hard to get a diagnosis now – imagine how hard it was over 30 years ago – before the Internet, Facebook, Twitter, message boards, chatrooms.  No online support – no support anywhere.

Finding any information possible at the Public Library.  Days that you feel like death warmed over, heading out to the library to Xerox medical articles you don’t understand, poring over them at home, trying to find any kernel of hope for what you have.  Then trying to convince doctors when your family doesn’t even believe you.

Finally, a doctor believes you…but he’s the wrong kind of doctor so he sends you away.  Another year goes by.  The endo recommends surgery but there are only 3 possibilities anywhere.  NIH – close by and free, Montreal – they speak French – and San Francisco.

After a diagnosis, 6 weeks of inpatient testing at the NIH.

From my bio at http://www.cushings-help.com/maryos_story.htm

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

Filed under: Cushing's, Interview, pituitary | Tagged: , , , , , , , | Leave a comment »

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