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


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67 replies to this topic

#1 MelissaTX

 

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Posted 07 March 2011 - 07:44 PM

Hi everyone. I have been thinking about Cushing's Awareness Day.

I want to create a list to show how many of us struggle with multiple surgeries. If you would like to participate, can you please reply below?

Please give your name, location, date of each pituitary surgery, and date of BLA. Please give us your real name, or I'll give you a fake name. I believe it will humanize us as patients when we use first names. I will just use your name and general location, maybe state or province or country.

I will format all the entries and then post the nice list that I hope we will all blog and share on April 8th. Hope you will participate. It is really important to educate our friends and family about how common it is to need multiple surgeries. Thanks!

I'll start:


Melissa, Texas. Pituitary surgery #1: June 2009. Pituitary surgery # 2: March 2011.

#2 gmcook3

 

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Posted 07 March 2011 - 10:21 PM

Gina, Georgia. Pituitary surgery #1: March 2009. Bilateral Adrenalectomy: October 2009.

#3 Vicki

 

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Posted 07 March 2011 - 11:14 PM

Vicki, Buffalo, NY. Pituitary surgery #1: October 2009. Pituitary surgery # 2: April 2010. BLA soon to come.

#4 mbinig

 

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Posted 08 March 2011 - 12:25 AM

Melissa, Florida. Pit surgery #1: March 2009. Pit surgery #2: December 2009. BLA to come?

#5 jellybean3409

 

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Posted 08 March 2011 - 01:23 AM

Jamie, Washington State. Pituitary surgery #1: March 2010. Pituitary surgery #2: April 2010.

#6 Juneau

 

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Posted 08 March 2011 - 01:53 AM

Brenda, Alberta, Canada: Pituitary surgery May, 2007, BLA May, 2007

Good luck with your list. It may help people to realize just how many of us there are!

Edited by Juneau, 08 March 2011 - 01:53 AM.


#7 drc1218

 

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Posted 08 March 2011 - 02:15 AM

Christy, New Mexico. Pituitary surgery November 2010. Considering BLA

#8 patvytpit

 

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Posted 08 March 2011 - 09:49 PM

Pat, California. Pituitary Surgery #1: August 2000. Pituitary Surgery #2 December 2007. Currently testing for surgery #3.

#9 Nan

 

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Posted 08 March 2011 - 11:22 PM

Nan, New Jersey, Pituitary Surgery, October 2010

#10 esg31

 

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Posted 09 March 2011 - 01:01 AM

Dan, Delaware. Pituitary Surgery #1 August 2009. Pituitary Surgery #2 February 2011.

#11 MelissaTX

 

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Posted 09 March 2011 - 02:46 AM

This is a great list, everyone. There are another 20 or so posted on the facebook cushing's page. That's 25 people that I can point to and say, "see? I'm not the only one with a "reoccurrence"," or "look at all these people who suffer for years and years, like me." both are very powerful messages.

I hope more will add info to the list.

Also, be sure to add radiation and other treatments, too, if you wish. Also, if you are testing still, please end your entry with that.

#12 aautomo884

 

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Posted 09 March 2011 - 05:37 AM

Cyndie M, New Jersey, Pituitary 1-09-2009 Upcoming BLA 4-28-2011.

This is a great list, everyone. There are another 20 or so posted on the facebook cushing's page. That's 25 people that I can point to and say, "see? I'm not the only one with a "reoccurrence"," or "look at all these people who suffer for years and years, like me." both are very powerful messages.

I hope more will add info to the list.

Also, be sure to add radiation and other treatments, too, if you wish. Also, if you are testing still, please end your entry with that.


Yea I think there stats of 80% initial success rate is MUCH LOWER then what they fudge the numbers to be...

#13 LilDickens

 

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Posted 09 March 2011 - 06:01 AM

Kim S. , Pennsylvania- Surgery #1 Jan 2010 positive for Acromegaly but was trying to find a cure for Cushings.
In testing since Oct 2010 for Cushings.

#14 casperslove

 

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Posted 09 March 2011 - 01:08 PM

Kay, New Jersey, 1st & 2nd pit surgery June 2008 - in remission

#15 jlsrose

 

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Posted 09 March 2011 - 01:35 PM

Jenny, Iowa. Pituitary Surgery #1- May 2008. Pituitary Surgery #2- April 2009. Currently considering a BLA vs. pituitary surgery #3.

#16 TanyaW

 

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Posted 09 March 2011 - 05:06 PM

Tanya Buffalo, NY. Pituitary surgery #1 - February 2010, currently seeking re-diagnosis

#17 radtravler

 

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Posted 10 March 2011 - 03:17 AM

Denise Potter Dallas,Oregon

2003 pit surgery Vanderbilt
2004 canceled pit removal after screws where in (I was in pre-op) Vandy
2004 Stereotactic Radiosurgery- Vandy
2005 Right half of Pit removed - OHSU
2005 BLA - OHSU

#18 MelissaTX

 

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Posted 13 March 2011 - 05:01 AM

16 of us listed here. I'm going to check how many reported in on the FB side...

#19 MelissaTX

 

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Posted 13 March 2011 - 05:07 AM

24 listed in the facebook site. That's 40 of us.

Can we get that number up to 50?

#20 patvytpit

 

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Posted 13 March 2011 - 07:23 PM

Can you add the FB info here so we can see it all together?




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