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MelissaTX

Add your name; Help us show how difficult Cushing's is to cure

68 posts in this topic

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MaryO, Virginia

Pituitary tumor removed by transphenoidal resection at NIH (Dr. Oldfield) Nov 3, 1897

Fall 1999, learned that pituitary gland was shutting down. Becoming adrenal insufficient because of it.

2001, Growth hormone numbers show deficiency

September 2004, Went back on daily Cortef

December 6, 2004, started on daily Growth hormone injections

April 27, 2006, argenine (growth hormone test) retested

April 28, 2006, diagnosed with kidney cancer (renal cell carcinoma). Did GH help it grow?

May 9, 2006, entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes.

Now, growth hormone is still low. Since I am over 5-years post op on the cancer, I could take it again but am leery.

 

 

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From Facebook:

  • Jenny, Louisiana 43yrs,, 1st pituitary surgery 2000, 2nd pituitary 2002, gamma knife radation 2003 to the pituitary. sent me to little rock ark in 2004 3rd pit surgery with spinal leakage then a repair to come back to louisiana and spinal leakage again, 3 surgeries to pack a hole and then 4th surgery removal of the whole pit. 2005 both adrenals were removed.
  • Cecilia, South Africa, Pituitary surgery May 2011.
  • Barbara, West Islip, NY pit surgery Dec 9 2011
  • Margie Reed-41, Venus, TX- pit surgery 08, diagnosed with Cushings in 09, waiting for date of pit surgery #2.
  • Ashley, National Institutes of Health, Bethesda,Maryland. Pit surgery on August 4,2001, spinal leakage repaired August 8,2001 and several day long stay in ICU started on August 10,2001. I was 12 years old.

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Jennifer, New Jersey

Pituitary Surgery 2004

Bilateral Adrenalectomy 2006

Radiation in the future for highly elevated ACTH levels.

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New:

 

Elizabeth, California.

 

Pituitary surgery #1, 2009.

Pituitary surgery #2, 2010.

In remission but constantly testing for a recurrence.

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Mary, Michigan

Pituitary surgery, 2007 with Dr. J.

Thought I had a cure, but still sick, not rediagnosed,

No insurance and can't afford to test,

MRI's appear clear

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Alicia from Alberta, Canada. Pituitary surgery Febuary 2002. BLA date to be determined.

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Eve, Sugar Land TX. I am just diagnosed (today in fact!) but have struggled with symptoms for about 8 years. Awaiting surgery to remove the right adrenal & its nasty little tumor---and hopefully that will be the first step back to the old me!

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Melissa of TX, thanks for doing this work and pulling this list together. As I read through it, the list has a powerful impact to the reader. Having to have a list like this makes me sad (that any of us are sick), but doing so helps the world understand more about who we are.

 

I elected not to participate for personal reasons, but encourage others to do so.

 

One minor thought....pituitary adenomas are not the only thing that causes Cushings. Pituitary Hyperplasia is the rare form of this disease and thought you may want to update the definitions portion to include pituitary hyperplasia along with pituitary adenomas.

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Sharon from Long Island-Pituitary Surgery Nov 2007 Mt Sinai Hospital New York City- in remission.

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Thanks, everyone. Melissa will update the list on her blog on April 8 - Cushing's Awareness Day. I'm keeping my version updated whenever new names come up so there's not quite so much work in April :)http://cushie.info/index.php?option=com_content&view=article&id=1002&Itemid=127

 

Susan, there's info about Pituitary Hyperplasia on the original Definitions list that Melissa copied that info from. http://www.cushings-help.com/definitions.htm I've added that to my list per your suggestion.

 

Thanks!

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Thanks, MaryO. My apologies, I didn't go back to the original but read just what was in this thread.

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Not a problem :)

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Sheila Mary from Ottawa, Ontario, Canada. Unsuccessful Pituitary Surgery in 2008. Currently testing for upcoming surgery in 2012.

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Vanessa Faye Percy, 25 years old, Eau Claire, Wisconsin. Left adrenalectomy for Adenoma on January 26th, 2012

Taking corticosteroids and having issues with my liver, gallbladder, stomach, and digestive track now

(Sorry for the double post... just realized I wanted to add more info!)

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Rebecca Lucas, 36, Memphis Tn...

Cushings symptoms started 1999

Cushing's Disease diagnosed Dec. 03

transsphenoidal adenomectomy in Jan 04

My Neurosurgeon said my tumor had been there for about 5 yrs and

it was so big I had probably 6 months before it would have killed me.

Fast forward to now 2012 I have severe pain in arms and legs with no reason

no energy. This disease has robbed me of my life!!!

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Thanks to everyone who has done this. If you want to update your info at any time, please post it here - either say that it's an update or post the number next to your name.

 

The finished results can be seen here (and there were a couple additions in the last few days): http://www.cushiewiki.com/index.php?title=Cushie_Warriors

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Talya, Colorado

Pituitary Surgery #1 - May 2012 with Dr. McC. Two tumors - 1.5 cm and 3mm.

August 2012, currently testing for surgery #2.

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Thanks, Talya. What a pretty name!

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