Notes on the Magic Foundation Cushing's Conference, 2012

Here are links to all the posts in order, although some still need to be edited.  I posted these directly from the meeting hall with no rereads or rewrites.  If anyone has anything to add, edit or delete, please let me know!

• Magic Conference: Understanding your Pituitary Gland in Health and Disease

Dr. Frohman will present an overview of the pituitary gland. He will cover general aspects of pituitary function and testing and also review the types of pituitary disease that occur, including pituitary tumors and Sheehan’s Syndrome. Many people ask and wonder if Growth Hormone Deficiency can be inherited. Dr. Frohman will also briefly address that concern.

http://cushingshelp.blogspot.com/2012/07/magic-conference-understanding-your.html

• Magic Conference: Testing and Diagnosis Process for Pituitary Disorders

Pituitary disorders can be difficult to diagnose in many cases. Dr. Salvatori will discuss the different testing and diagnostic procedures to determine the pituitary disorder. MAGIC receives many calls asking about diagnostic procedures. This segment will be helpful in understanding what procedures are used today to provide the best treatment available. 

http://cushingshelp.blogspot.com/2012/07/magic-conference-testing-and-diagnosis.html

• Magic Conference: Managing Medications and Aftercare of Treatments

It is crucial to monitor your treatments and aftercare of treatments when living with a pituitary disorder. Dr. Salvatori will discuss the importance of these issues so you will be aware of how to manage your pituitary disorder. A simple diagnosis does not mean that medications may be altered or changed in the future. This segment will assist you with information on how to manage your future.

http://cushingshelp.blogspot.com/2012/07/magic-conference-managing-medications.html

• Magic Conference: Cushing’s Disease, Are We Closer to Medical Therapies?

A significant proportion of patients with Cushing's Disease are not cured by primary surgical treatment, the disease is prone to relapse and significantly damages quality of life. Adjuvant radiotherapy is an increasingly unattractive option for clinicians who wish to spare their patients hypopituitarism and other potential complications. Some pharmacological options are currently available but tend to have dose-limiting side effects. New agents recently approved or under investigation will be discussed and strategies to select the optimal drug or drug combination for individual patients reviewed.

http://cushingshelp.blogspot.com/2012/07/magic-conference-cushings-disease-are.html

• The Trip So Far...

MaryO's personal experiences and thoughts

http://cushingshelp.blogspot.com/2012/07/the-trip-so-far.html

• Cushing's Help Turned Twelve During the Conference!

Twelve  years ago I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself.  We decided that I could.

This website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else's life.

http://cushingshelp.blogspot.com/2012/07/today-we-twelve.html

• Magic Conference: Treating Cushing’s Disease with Surgery: Ways of Achieving a Cure

Dr. McCutcheon will discuss the ways of treating Cushing’s disease from the surgical perspective, including the different ways of getting to the pituitary, the chances of success, and the potential complications. In addition, special nuances and pitfalls ofsurgery in Cushing’s (as opposed to other types of pituitary tumor) will be addressed. 

http://cushingshelp.blogspot.com/2012/07/magic-conference-treating-cushings.html

• Phil and the Zebra Undies

Dr. McCutcheon is a surprise participant in a gift to Phil.

http://cushingshelp.blogspot.com/2012/07/phil-and-zebra-undies.html

• Real Talk: Psychological Process of Illness, part 1

This Segment will be broken into two sections. Part I will be provide an open opportunity for participants to ask relevant questions around the emotional/mental issues in living with a chronic illness. Participants will be able to openly talk about depression, anxiety, trauma, and other processes that occur when living illness.

Due to confidentiality issues, most of this segment is not shared.

http://cushingshelp.blogspot.com/2012/07/real-talk-psychological-process-of.html

• Real Talk: Psychological Process of Illness, part 2

Part II will focus on seeing ourselves as survivors of illness and the process of staying empowered through illness that impacts us in such a powerful way. Principles of empowerment and how one can turn adversity into opportunity will be discussed. This segment should create an environment that is non judgmental and motivating.

Due to confidentiality issues, most of this segment is not shared.

http://cushingshelp.blogspot.com/2012/07/real-talk-psychological-process-of_21.html

• The Rest Of The Trip

Wind-up and heading home

http://cushingshelp.blogspot.com/2012/07/the-rest-of-trip.html

Eventually, all these posts will be edited, cleaned up and typos corrected.;

Pasireotide in Cushing's Disease

N Engl J Med 2012; 366:2134-2135 May 31, 2012

 

To the Editor:

In their study, Colao et al. (March 8 issue)1 examined the clinical efficacy and safety of two different doses of subcutaneous pasireotide in patients with newly diagnosed, persistent, or recurrent Cushing's disease. Since alternative therapies (including bilateral adrenalectomy) are available for patients with persistent or recurrent Cushing's disease, it would be important to consider all options before embarking on what might turn out to be many years of medication.

Giovanni Targher, M.D.
University of Verona, Verona, Italy 
giovanni.targher@univr.it

No potential conflict of interest relevant to this letter was reported.

1 References

To the Editor:

The phase 3 trial by Colao et al. showed the efficacy of 12 months of treatment with subcutaneous pasireotide (600 or 900 μg twice daily) in patients with Cushing's disease. We now report results after 7 years of treatment with pasireotide administered as part of a phase 2 study.1 In July 2004, a 43-year-old woman with Cushing's disease, whose 24-hour urinary free cortisol level was 9.2 times the upper limit of normal, began 15 days of treatment with subcutaneous pasireotide (600 μg twice daily) that resulted in normalization of these levels (Figure 1AFIGURE 1Effects of Pasireotide Treatment on 24-Hour Urinary Free Cortisol Levels and on Adrenocorticotropin Hormone Levels during Desmopressin-Stimulation Testing.). When treatment was halted for 35 days, urinary free cortisol levels increased. In September 2004, she resumed treatment with pasireotide (600 μg twice daily), which led to clinical improvement (i.e., a weight loss of 13 kg, regular menstrual cycles, and reduced hirsutism). Hyperglycemia ensued (glycated hemoglobin, 5.7 to 7.7%), and weakness necessitated a temporary reduction in the dose to 450 μg twice daily (November 2004 to October 2005). Since November 2005, when the patient resumed taking the 600-μg dose twice daily, urinary free cortisol levels have remained in the normal range at most monthly assessments. Basal and desmopressin-stimulated adrenocorticotropin levels also decreased as a result of treatment with pasireotide (Figure 1B). To date, she has not had any serious adverse events. This case illustrates the long-term efficacy of pasireotide without the development of resistance to the drug's effects.

Rossella Libé, M.D.
INSERM Unité 1016, Paris, France

Lionel Groussin, M.D., Ph.D.
Université Paris Descartes, Paris, France

Jérôme Bertherat, M.D., Ph.D.
Hôpital Cochin, Paris, France 
jerome.bertherat@cch.aphp.fr

Drs. Libé and Bertherat report being investigators for studies of pasireotide in Cushing's disease funded by Novartis. No other potential conflict of interest relevant to this letter was reported.

1 References

Author/Editor Response

We concur with Targher's implication that the advantages and disadvantages of all management options should be considered for each patient before a specific treatment is advised.

Libé and colleagues present a very interesting case of a patient with Cushing's disease in the extension of a phase 2 study of pasireotide. This patient was treated with pasireotide for a much longer duration than the 1 year reported in the phase 3 study.

Annamaria Colao, M.D., Ph.D.
University of Naples Federico II, Naples, Italy

Mario Maldonado, M.D.
Novartis Pharma, Basel, Switzerland

Since publication of their article, the authors report no further potential conflict of interest.

 

From http://www.nejm.org/doi/full/10.1056/NEJMc1204078

Have You Had A Cushing's Recurrence? Please Help with This Video Project!

Trisha writes: 

Working on a new video with Beth G. as my partner. With Corlum now thrown in the mix, we want to compare the best treatment options for recurring cushings. We want to hear from you about weather you are glad you had a BLA? if you could do it over again, would you? If you had meds available, did you try them first? What challanges do you have on a regular basis because of BLA? Why would you not want a BLA? What do you hope to get out of having a BLA?

We are not looking for the medical side, just the human side. If you would like to participate, message both Beth and myself on the same message. If you have a webcam, we would like to include video into the video and set up an interview.

Remember, its all about Awareness!

 

Beth says:

I'm working on a questionnaire so that everybody can answer the same set of questions. Trisha or I will email it so you to fill out, so can anybody interested please send us your email address? We're interested in you if: 

a) You've had a BLA

b) You're considering a BLA

c) You're a potential candidate but would never consider a BLA

PLEASE REMEMBER: Any information you provide related to a BLA will become public, so if you're not willing to have your thoughts and answers shared with the public (meaning outside of this group in a video that will hopefully go viral on youtube!) then please don't sign up to help with this project!

Feel free to ask us questions! Thanks!!

 

If you want to participate, please email Beth at icybluesnow@gmail.com

Thanks!

Interview with Robyn Y (2ndtimecushie), Recurrent Pituitary Patient, June 15, 2011 at 5:00 PM eastern

 Robyn was diagnosed with Cushing's Disease in 2004 and had 2/3 of her pituitary removed.  This was after 8 years of going from doctor to doctor and thinking she was going to go crazy.

She writes: "Anyway, after my surgery in February of 2004 I had probably a good three years and then I slowly started feeling bad again.  I am now going through what I did 8yrs ago.  My endocrinologist doesn't think that the Cushing's is back because of my tests being borderline.  He told me that he thinks I am obese and I need to have stomach surgery.  I seriously cried for days and told him that I disagreed and I wasn't going to give up...I need support in following through with the tests that I need to.  Like I said I have been putting them off because subconsiously I am so worried that they will tell me that I don't have the Cushing's back and I will have to live like this the rest of my life.  Tired of being so heavy and uncomfortably large, sweating to the point of dripping, aching all over and not having any desire or motivation to do anything.

I'm praying the tests come back showing that the tumor is back and they will go in and take the rest of the pituitary out."

 

Read Robyn's complete bio

This interview will be archived and available through Cushing's Podcasts on Posterous,   BlogTalkRadio, or through iTunes Podcasts