Straight Talk Cushing's

It's good to have choices.

Now there are two FDA-approved drugs available for those Cushies who are not a candidate for a/another surgery but still remain uncured -- Corcept's Korlym and Novartis' Signifor. Two years ago, there were none.

The long-term benefits are clear.

The entire Cushing's community benefits from Big Pharma dollars spent to create what we all want -- disease awareness, earlier diagnosis for all patients, and better treatment options.

To this end, I want to share the fist video that I have seen from Novartis to further this shared mission. It is well done and quite informative.

Share the link and save a life.

http://m.youtube.com/watch?v=Z2vS7sVvx0o&feature=youtu.be

(I tried to embed this video but this action is forbidden by the Novartis youtube channel. Click through. It is an informative video.)

Cushies can die after exhausting all treatment options

This makes me incredibly sad.  I have had two unsuccessful pituitary surgeries, and I am currently doing medication therapy (pm ketoconazole with am Cortef) until the tumor culprit comes out of hiding and presents itself on the pituitary MRI for a third pituitary surgery.  No one knows how long that will take.

After my first pituitary surgery, I developed ptosis, or drooping eyelid.

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Cushing’s: the worst case scenario

Viv Thornton-Jones

Churchill Hospital, Oxford, UK.
Endocrine Abstracts (2008) 15 S58

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We present the case of a 40-year-old female who was referred to our Department in 1993, for further management following the diagnosis of Cushing’s disease. She proceeded to a transsphenoidal adenenomatectomy (TSA, note: pituitary surgery) which resulted in a biochemical cure.

In 1998 she presented with recurrence of Cushing’s Disease, which was managed by a 2nd TSA (pituitary surgery) followed by external beam irradiation.

Bilateral adrenalectomy followed a year later, due to the inability to control her disease.

In 2001 she presented with Nelson’s Syndrome managed by a 3rd TSA (pituitary surgery) followed this time with Gamma Knife surgery.

In 2004 she presented with manifestations consistent with recurrence of Nelson’s Syndrome and proceeded to a 4th TSA (pituitary surgery). 

Despite the risk of blindness, the patient agreed to a second course of Gamma Knife treatment for the possibility of tumour control.

Over the next 2 years her clinical picture deteriorated, resulting in a right partial ptosis and a sixth nerve palsy.

She was referred to an Oncologist who offered her Chemotherapy, but she refused treatment.

The patient was then in the care of the Palliative Care Team and she died peacefully at home in 2006.

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Endocrine Abstracts (2008) 15 S58

Thank you to Ami and MaryO for finding this abstract.