Cushing's Help Boards

Click here to register now and gain access to all of our features.

Once registered and logged in, you'll be able to ask questions and replying to existing content. You'll be able to customise your profile, receive reputation points as a reward for submitting content, while also communicating with other members via your own private inbox, plus much more!

This message will be removed once you have signed in.

Welcome aboard!

staticnrg

Mega Poster!
  • Content count

    5,817
  • Joined

  • Last visited

  • Days Won

    2

staticnrg last won the day on November 8 2010

staticnrg had the most liked content!

Community Reputation

7 Neutral

About staticnrg

  • Rank
    Robin
  • Birthday 10/22/1957

Contact Methods

  • Website URL
    http://survivethejourney.blogspot.com/
  • ICQ
    0

Profile Information

  • Location
    SW Virginia
  • Interests
    Technology, Sci Fi, computers, people, kids, and life

Recent Profile Visitors

4,850 profile views
  1. Do you want to keep the Cushing's Help message boards? Do you know that MaryO spends thousands out of her own pocket to keep it running? Do you want to wake up one day and find it gone? If the answer to the last one is "no", then take the time to donate what you can each month/quarter/year. I know I'm not here much anymore since my BLA, but I still care that others have this support. I would have never found a doctor to help me nor understood this disease if it hadn't been for this site. There are so many more out there who need them, too. If you are here, I suspect you do, too. If you look at the right side of the main page when you login, you will see the donation site and Donations: 801.61 USD || Goal Amount: 2906.00 USD. It shows we still need to donate at least $2104.39 for this year. So, skip that lunch out at McDonalds or Wendy's and donate the $5 or $6 dollars instead. PBJ will taste really good that day! If we all donate just a little bit every month, it will make a difference. Thank you, Robin
  2. ALERT DR. F PATIENTS: The Tuesday night, 9/18/12, clinic, has been moved to Wednesday, 9/19/12. The Tuesday night, 9/25/12, clinic, has been moved to Monday, 9/24/12. The Tuesday night, 10/2/12, clinic, has been moved to Wednesday, 10/3/12. The Tuesday night, 10/9/12, clinic, has been moved to Wednesday, 10/10/12. Deposits as always will be due at 5PM, the Friday before next week's clinic. No 10" drive-by phone appointments September 17, 18, 25, and 26. No 10" drive-by phone appointments October 1, 2, 8 and 9.
  3. I think we can take questions in the BTR chat, too, can't we, MaryO?
  4. Cushings-Help.com Announces The Availability Of An Investigational Drug ForSevere Cushings's Syndrome On a Compassionate Use Basis November, 2011 We would like to make patients aware that mifepristone, aninvestigational drug that blocks the action of cortisol and is being developedby Corcept Therapeutics Incorporated, is now available on a compassionate usebasis for eligible patients in the United States with Cushing’s syndrome whohave no other treatment options. Under this compassionate use program, the FDA allowsseriously ill patients who lack satisfactory alternative treatment options touse an investigational new drug that is still under development. Corcept has completed a Phase III trialinvestigating the safety and efficacy of mifepristone in patients withendogenous Cushing’s syndrome. Theinformation from that study has been submitted to the FDA for review of safetyand efficacy.. For information on thetrial results see http://www.corcept.com/cushings_clinical_trials. The company has submitted a New DrugApplication (NDA) seeking approval for this drug. Patients interested in using mifepristone should consultwith their endocrinologist. Theirendocrinologist, in turn, should contact Corcept for information about thecompassionate use program. Please notethat Corcept will provide information solely to physicians. Toll Free: 1-877-367-6550 Website: www.corcept.com/cushings_expanded_access E-mail: EAP@Corcept.com (Edited/changed at 8:54 PM EST by Dr. F's request. He sent another which changes the wording a tiny bit.) This post has been promoted to an article
  5. Cushings-Help.com Announces The Availability Of An Investigational Drug ForSevere Cushings's Syndrome On a Compassionate Use Basis November, 2011 We would like to make patients aware that mifepristone, aninvestigational drug that blocks the action of cortisol and is being developedby Corcept Therapeutics Incorporated, is now available on a compassionate usebasis for eligible patients in the United States with Cushing’s syndrome whohave no other treatment options. Under this compassionate use program, the FDA allowsseriously ill patients who lack satisfactory alternative treatment options touse an investigational new drug that is still under development. Corcept has completed a Phase III trialinvestigating the safety and efficacy of mifepristone in patients withendogenous Cushing’s syndrome. Theinformation from that study has been submitted to the FDA for review of safetyand efficacy.. For information on thetrial results see http://www.corcept.c...linical_trials. The company has submitted a New DrugApplication (NDA) seeking approval for this drug. Patients interested in using mifepristone should consultwith their endocrinologist. Theirendocrinologist, in turn, should contact Corcept for information about thecompassionate use program. Please notethat Corcept will provide information solely to physicians. Toll Free: 1-877-367-6550 Website: www.corcept.com/cushings_expanded_access E-mail: EAP@Corcept.com (Edited/changed at 8:54 PM EST by Dr. F's request. He sent another which changes the wording a tiny bit.)
  6. These look like great questions. If you haven't listened to the first two live interviews, you should do that. Some questions may be answered already in those. Robin
  7. I hear you. Hugs, Robin
  8. MaryO, what if we did a Cafe Press site? You know some of the designs I've done for various things? I could fix those with "sayings" that folks want and put them on a cafe press site. I could price them for modest profit and the profit could go for the running of these boards and the C-H sites. I'm all for that! Hugs, Robin
  9. CLick here to access the second interview. Robin
  10. The article Dr. F. mentioned: Dr. F is a hoot, isn't he? I enjoyed it, too. Hugs, Robin
  11. http://lyrics.payplay.fm/Heather+Sullivan/Stronger <H1 id=pageName>Stronger BUY DIGITALby Heather Sullivan </H1>Has the world gone wild Does it seem a little colder I?ve gone a thousand miles And I feel a little older But so much wiser I have burned And I have tried I?ve made my way through the Dark Lighting candles Sometimes I?ve cried But I am stronger now A little stronger now And If I still have a heart I will love a little harder And if it all falls apart I will dig a little deeper Move a little closer Because I?ve yearned To be free From the chains that have bound me I?ve been tangled Now I believe That I am stronger now A little stronger now Because I?ve burned I found it on a free-use site...(MaryO showed me the site) You can find the music here: (Page down) http://podsafeaudio.com/jamroom/bands/858/ Hugs, Robin
  12. Penny, in about 30" you should be able to hear it here: http://www.blogtalkradio.com/CushingsHelp/ MaryO will upload it to iTunes soon, too, and you can find it there with the keyword Cushing's. (I think that's how I find them...lol!) Hugs, Robin
  13. Mornin'! Here is the letter I sent to about 10 doctors, including Dr. F and Dr. L. Dr. L has responded and is going to answer (by email) the questions I thought of and put in my letter , and I'll post those on my blog. But those of you who know him well (I've never met him) might convince him to be on a BTR show and answer questions. Actually, he agreed to do it at one time, but we never could get the person scheduling things to get it done. The letter: I have not heard from any of the others. Dr. F and Dr. L are the only two who responded. Sad, eh? Hugs, Robin
  14. Hi, Rissa. In answer to question 1, here is what has been done recently: http://home.comcast.net/~staticnrg/Cushing...mansArticle.pdf There is a good thread about it here: http://cushings.invisionzone.com/index.php...8&hl=nieman What I took issue with, and maybe we could expound on your excellent question(s), is that they say in there "The evidence on which many of these recommendations have been made is of low to very-low quality because there are limited data linking diagnostic strategies to patient outcomes as much of the work has focused on developing, validating, and ascertaining diagnostic test performance." But we all know that any doctor who MAY take the time to read it will not see that sentence nor will he see what's on down about the need for further research, etc. Gotta get to bed..... more another time... XOOX Robin
  15. Melly, not to butt in, but there is new research on that and I just posted some articles on my blog. The most recent has a link to another one. xoOX Robin