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staticnrg

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Everything posted by staticnrg

  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. Availability Of An Investigational Drug For Severe Cushing’s Syndrome On a Compassionate Use Basis December, 2011 We would like to make patients aware that mifepristone, an investigational drug that blocks the action of cortisol and is being developed by Corcept Therapeutics Incorporated, is now available on a compassionate use basis for eligible patients in the United States with Cushing’s syndrome who have no other treatment options. Under this compassionate use program, the FDA allows seriously ill patients who lack satisfactory alternative treatment options to use an investigational new drug that is still under development. Corcept has completed a Phase III trial investigating the safety and efficacy of mifepristone in patients with endogenous Cushing’s syndrome. The information from that study has been submitted to the FDA for review of safety and efficacy. The company has submitted a New Drug Application (NDA) seeking approval for this drug. Patients interested in using mifepristone should consult with their endocrinologist. Their endocrinologist, in turn, should contact Corcept for information about the compassionate use program. Please note that Corcept will provide information solely to physicians. For more information: http://www.corcept.com/cushings_expanded_access Toll Free: 1-877-367-6550 E-mail: EAP@Corcept.com Dr. F asked me to post this again. (MaryO, I hope this is ok.)
  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.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
  6. 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.)
  7. 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
  8. Hi, folks... Try here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B3VeLPLQdbGhZGJhODU4YmQtZjgxZS00ZDYwLThjOGItYTY5NmY1YTVlYTdl&hl=en If you want to download it, go to the left and click "file" and use the download option. Hugs, Robin
  9. I don't know if you can view the attached file or not, but that's the full text journal article about what Tofu just posted. Excellent find, Tofu! The range is 1pM to 10 nM. 2.78 nM = 1ng/ml. I'll do the conversion to units we know (ug/dL) after while. Can't right now... Robin C0AN00242A.pdf
  10. Look...it's been done for free cortisol in saliva: http://www.icee-con.org/papers/2008/pdf/O-216.pdf hugs...
  11. I have ideas, but no time to post them now. As with diabetes, a meter would only be used so the individual could track his/her cycles and cortisol levels. I think how many times I would have loved to have one to decide if my trip to the lab or doing a UFC is worth doing at the time. I think for episodic/cyclic Cushing's patients (which tends to be most of us), it would be a treasure and make it so much easier to figure out when to test. Also, I think it would help us determine if we might have a recurrence, taking away the guessing game and sending us back to our endos. It's hard to refute a diabetic who shows his/her meter showing high blood sugars. I think that a meter would have to be approved by the FDA to be reputable enough to be accepted, but once that hurdle was passed, it would be used and accepted. Some will resist, obviously. I'm sure much testing to validate the levels the meter shows to lab-tested results would have to happen. Shoot , it woul be awesome if it only did increments of 5ug/dL.... a "less than" or "greater than" kind of thing. Later....must run...students coming in. Robin
  12. I found the email address of the professor under which Ms. Campbell was working and emailed him about our questions/dilemma. I hope he responds. Hugs, Robin Great, Susan!! Awesome.
  13. Professional athelets also test cortisol levels. And Addisonians/CFS sufferers would benefit, too. Their are a lot of folks, and if more knew about it, more would benefit from one. LisaMK looked into one overseas used on pigs but said they couldn't get it sensitive enough for humans. They tried. Here are two other possibilities, though, I've been following. I sent the info to Dr. F a while back: http://www.cnn.com/2...dex.html?hpt=C1 http://www.technolog.../?nlid=2672&a=f The second is at UCLA. I think we need to push someone somewhere about this. Pfizer? They are good about the GH. If enough of us do it, maybe..... Robin
  14. Wow, now that's what I'm talkin' about!!! Yes, yes, yes.... most of the "research" done today is skewed, especially if done by a medical/pharmacological company. Even researchers at the NIH seem to skew their research/studies by choosiing patients which show what they want to show. No, I can't prove it exactly, but the history of folks on this board say a lot. Good article!! Hugs, Robin
  15. Since prednisone has such a long half-life, I don't know if this will work for you. It may keep you up all night. Let us know, ok? Hugs, Robin
  16. If I'm reading that right, it means we are actally absorbing/using more of the cortisol we take when split into more doses. So we might be able to take less. Right? Obviously, if it isn't being passed out of the body, we are absorbing it. Am I seeing that right? Interesting! Robin
  17. Hi, Melissa. I remember this study. What bothers me the most about it is the fact they correlate the diet soda drinking to gaining weight. The converse could be true... I can't lose weight, so I'll drink diet sodas in an effort to try to lose. Not to mention the stigma of an overweight person drinking a regular soda. I know I'd get remarks from folks if I did. Instead of correlating diet soda drinking to obesity, why aren't they studying why obese folks can't lose even though they drink the diet sodas and possibly do all the other "right things"? Why can some folks eat all the junk food they want and drink the sugary sodas but never get obese? Why aren't they studying that? The problem is probably more endocrine than anything to do with sodas. This, to me, is junk science even though done scientifically. It's like "proving" that butterflies live longer if they can fly. Well, duh. "Scientists" are more into getting the research money than they are into doing valid science anymore. I can say that because I have science degrees, so I'm belittling myself in a way, too. And that is one reason I respect Dr. F so much. He avoids the junk research and does valid research although he gets less research money for it. I won't get into the details unless someone is interested, but if you go to my blog and read the 4-part retrospective written by a smart person who has gone through the CUshing's journey, you'll get an inkling. It happens with Cushing's research, too. I hope I didn't offend anyone. It was not my intention. Hugs, Robin
  18. I'm wary of some of this junk science. I'm not sure how valid it is. Having said that, though, I'm also wary of aspartame. I don't drink many sodas, but when I do, I buy the diet ones with splenda in them OR I buy sparkling water and make my own. There are several good brands of diet sodas with splenda: Diet Rite and Diet RC Kroger brand Food Lion Brand (and other grocery store/chain brands) Some Pepsi (maybe Pepsi One?) Coke did have one with Splenda, but not sure if they still do Orange Crush There are some cream sodas (can't remember the name right now) with splenda I crave the "fizz" a lot, so I tend to mix concentrated cranberry juice with sparkling water for my own fizzy drink. I love Fresca and wish they made it with stevia or splenda. Again, I'm sure plain water is best, but since my BLA I'm having a hard time with plain water. In fact, I don't crave the fizzies as much, either. I want lemon/lime/cranberry tasting drinks with salt in them. Ha! Hugs, Robin
  19. Trying out the twitter connect on the newly updated Cushing's Help boards

    1. Moderator

      Moderator

      Looks like it worked :)

  20. So, what happens if I update here on the Cushing's board?

    1. Show previous comments  1 more
    2. staticnrg

      staticnrg

      How does it know who I am on twitter?

    3. Moderator

      Moderator

      Oh, I thought you had set that up already. I think that there are instructions on the "Everything Else" area but you set up your info in your profile under Twitter Connect

    4. staticnrg

      staticnrg

      LOL....I haven't explored that much. Love it!

       

      Now, how did you know I had commented on your comment to me?

  21. I hear you. Hugs, Robin
  22. 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
  23. I'm just the messenger with this!! But it's worth some time. We certainly need our input on how we perceive being a patient.
  24. please help with the Redefining Patienthood project. First survey here (will only take 1-2 mins): http://bit.ly/8MshbF Read more here: The Redefining Patienthood Project Launches - Aims, Goals, and Many, Many Questions Ahead http://post.ly/DGV6 If you are interested in helping define what it means to be a patient from your perspective, it may make a huge difference for us down the road. Jen is very active with those who count in making things happen in the right ways for us. Take the time to make yourself heard. Hugs, Robin
  25. MaryO, this is a very interesting article. I need to read it thoroughly (only read it quickly at work) and may blog about it. Did you blog on it, too? I find the part about keto very interesting. Hugs, Robin
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