Cushing’s Awareness Challenge: Day 12

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Mail!  I get all kinds of email asking questions about a variety of Cushing’s issues.  I’m not a doctor and I don’t play one on TV.  I don’t even play one on the internet.  People are desperate for answers, though, so the questions keep coming and I try to answer the best I can.

Here’s a recent question and answer.  Note that you have to be logged into the message boards to view the links in this post.

 

Question: My daughter was diagnosed w/ cushings in 2001 at the age of 20 & had the pituitary surgery.

In late 2013 she was diagnosed with a recurrence. I’ve read that that usually happens within 5 years, not a dozen years.

Regardless, there is a new research program but she was told she doesn’t qualify for it. The other medications offered are either exhorbitant ($100-200,000/year), another causes liver damage, another causes uterine problems. A 2nd surgery is not recommended according to  the surgeon (because there would be only a 50% rate of success due to the scar tissue from the original surgery), and radiation is being vetoed as well, being recommended ONLY as a very last possible resort.

Are there other parents who chat & share experience here? Will I find help as a parent here with my frustration over this disease? Are there other patients who communicate here that are from Michigan?  Are there other patients here who are suffering from the recurrence? Don’t get me wrong, I’m happy to find on several sites online today that there are so many success stories; I would just like to know what other options there are that perhaps our Dr. is missing.  Thanks.

My response:

S, since you have a Board Name, I assume that you are a member of the message boards.

There are areas specifically for recurrence – http://cushings.invisionzone.com/index.php?/forum/35-recurrences/

People in Michigan: http://cushings.invisionzone.com/index.php?/topic/13696-michigan/

Parents of patients: http://cushings.invisionzone.com/index.php?/forum/31-parents-spouses-children-and-friends-of-patients/

The more you read, the more you will learn.  Many patients with a recurrence  have a second pituitary surgery.  She might need to get another opinion from another surgeon.

Another option is a BLA – or have her adrenal glands out.  That can cause other issues, though.

The 2 drugs you  mentioned are Signifor and Korlym.  Although both are expensive, each has a patient assistance plan which lowers the cost dramatically.  Doses can vary dramatically so that they don’t necessarily cause liver or uterine issues.

Ketoconazole is another drug that’s sometimes used.

I did a search on the boards and there are 69 topics for Mifepristone (generic Korlym), 51 topics discussing the brand name Korlym, 40 for pasireotide (generic Signifor), 13 for the brand name Signifor, and 69 for keto (the common abbreviation on the boards for ketoconazole)

Here’s a personal experience from a woman on Korlym who likes it: http://cushings.invisionzone.com/index.php?/topic/53342-i-like-korlym/?hl=korlym

So – the information is out there.

I know it’s hard to process all this and make decisions.

I know it’s hard to process all this and make decisions. I had my one pituitary surgery in 1987, before the Internet was available so I had to really research all this in medical texts.

At that time, there weren’t any drug options. Just surgery and radiation. I decided off the bat if I should have a recurrence, I would not do radiation. I’d go for another pituitary surgery first, then a BLA if needed.

But that was then and this is now.  There is way more information which is much easier to find.  There are better surgical options and even some more medical ones.

Good luck!

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Signifor® (Pasireotide) is now Commercially Available

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.

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