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MaryO

~Chief Cushie~
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Status Updates posted by MaryO

  1. Updated: Is Your Doctor Being Paid to Prescribe Korlym?

    Top Doctors and Hospitals Receiving Payments From Corcept, makers of Korlym

    Read more at http://cushings.invisionzone.com/topic/54309-is-your-doctor-being-paid-to-prescribe-korlym/

  2. Cushing's Syndrome Eludes Treatment Paradigm or Standard Approach to Care

    Results of two systematic reviews indicate that while surgery is the preferred treatment, many patients present with contraindications without an accepted management paradigm leaving clinicians to follow a patient-centric approach to care.

    Read more at https://cushieblog.com/2018/07/07/cushings-syndrome-eludes-treatment-paradigm-or-standard-approach-to-care/

  3. In Memoriam: Kassey Whiterock
     
    Kassey passed away on June 30, 2016. Her sister said she died in her sleep. She was in the hospital due to a crisis on June 21st.
     
    Kassey was only 20 years old.
     
  4. Measuring TSH Levels Could Improve Diagnosis for Cushing’s Syndrome

    Measuring the variation in thyroid stimulating hormone blood levels between midnight and morning may be better for diagnosing Cushing’s syndrome than current approaches, a study suggests. 

    Read more at https://cushieblog.com/2018/06/30/measuring-tsh-levels-could-improve-diagnosis-for-cushings-syndrome/

  5. Comment added to Diana B (Diana Brown), Undiagnosed Bio

    My symptoms are almost identical to yours, but I have yet to have any cortisol testing done (I have doctors appointments coming up that I will ask about having the tests done).

    Read more at https://cushingsbios.com/2014/04/25/diana-b-diana-brown-undiagnosed-bio/comment-page-1/#comment-25835

  6. Tumors in Cushing’s Patients Have Distinct Genetic Profiles

    Based on their genetic profile, researchers were able to cluster tumors into three distinct subgroups...

    Collectively, the findings add new clues to the molecular mechanisms involved in the progression of benign pituitary tumors. They also provide new ground for developing targeted therapies, the researchers said.

     

    Read more at https://cushieblog.com/2018/06/23/tumors-in-cushings-patients-have-distinct-genetic-profiles/

  7. In Memory of Kate Myers :(
     
    Kate (Fairley here on the Cushing’s Help message boards) was only 46 when she died on June 23, 2014.
     
  8. In Memory of Samantha Cohn June 20, 2015

    Juilliard graduate Samantha Cohn, 34, crawled out a window in her 16th-floor apartment at West 71st Street and Broadway and jumped at 10:10 a.m.

    Her mother told investigators she had been diagnosed with Cushing’s syndrome, police sources said.

    Read more at https://cushingsbios.com/2015/06/20/in-memory-of-samantha-cohn/

  9. Comment added to Guest Question:  Is Itching Common with Cushing’s Syndrome?

    Were your itching, flushing and elevated BP episodes (cyclic) or there all of the time?

    In the comments area of https://cushieblogger.com/2018/05/30/guest-question-is-itching-common-with-cushings-syndrome/

  10. What Do You Think?

    A “friend” pushed me and I hit my head on a radiator and broke it and a few months after a tumor grew. I’ve been having symptoms ever since. Could I go after here and get compensation for medical care I need now?

    in the comments area of http://cushieblog.com/2016/12/21/pituitary-dysfunction-as-a-result-of-traumatic-brain-injury

  11. USC's 7 Tesla MRI scanner first to identify Cushing's disease in US patient

    A noninvasive 7 Tesla MRI scanner at University of Southern California is the first 7T scanner to be used on a patient with Cushing's disease in the U.S., according to a USC news release.  

    When a brain tumor was found to be "MRI-negative" in a 28-year-old female patient, physicians at the USC's Pituitary Center were unsatisfied with the results. After deciding to use the Neuroimaging and Informatics Institute's (INI) new ultrahigh field 7 Tesla MRI scanner to localize the tumor, the patient was officially diagnosed with Cushing's disease and researchers were finally able to be see the tumor that would've otherwise appeared hidden in a standard MRI.  

    Read more at https://www.healthimaging.com/topics/neuroimaging/uscs-7-tesla-mri-scanner-first-identify-cushings-disease-us-patient

  12. Cushing’s disease patients who exhibit nodules or masses in their lungs should be thoroughly investigated to exclude fungal infection with Cryptococcus neoformans, a study from China suggests.

    While rare, the infection can be life-threatening, showing a particularly worse prognosis in patients with fluid infiltration in their lungs or with low white blood cell counts in their blood.

    Read more at https://cushieblog.com/2018/06/16/cushings-patients-at-risk-of-life-threatening-pulmonary-fungal-infection/

  13. To all my Cushie friends who are still dealing with this horrible disease, keep fighting, don’t ever give up, you will get better.  I told a very close friend of mine the other day, if I had the power I would heal everyone you today.  Cushing’s is a horrible disease, and unless you have been through it there is no way anyone could ever understand it. 

    Read more at https://cushieblogger.com/2017/11/14/letter-to-cushies/

  14. Ectopic ACTH-producing thymic carcinoid tumors are rare, but often behave aggressively with local invasion and distant metastasis. We herein report a case of ACTH-producing thymic typical carcinoid tumor with lymph node metastasis treated by surgery and postoperative radiation therapy.

    Read more at https://cushieblog.com/2018/06/13/cushings-syndrome-caused-by-acth-producing-thymic-typical-carcinoid-with-local-invasion-and-regional-lymph-node-metastasis-a-case-report/

  15. In Memory ~ Sarah Fraik

    Sarah had recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease.  She died on June 13, 2011 after a brief illness at the age of 28.

    Read more at https://cushingsbios.com/2013/09/14/sarah-fraik/

  16. Radiation to the Whole Pituitary Compartment Effective at Controlling Cushing’s

    Radiation therapy targeting the entire sella — the compartment where the pituitary gland resides at the base of the brain — is effective at controlling Cushing’s disease and should be considered for patients with suspected invasive adenoma tumors, a new study shows.

    Read more at https://cushieblog.com/2018/06/02/radiation-to-the-whole-pituitary-compartment-effective-at-controlling-cushings/

  17. When classifying patients by tumor size, however, researchers found that patients with macroadenomas — tumors larger than 10 mm — had higher rates of remission and lower recurrence rates after endoscopic surgery. Patients with microadenomas (tumors smaller than 10 mm) had comparable outcomes with either technique.

    Read more at https://cushieblog.com/2018/05/26/endoscopic-surgery-should-be-standard-for-cushings-patients-with-large-tumors/

  18. Etomidate Found Effective in Severe Cushing’s Syndrome

    In April 2017, the patient arrived at the emergency room with sepsis — a potentially life-threatening complication of an infection — that originated in the gut.

    Because ketoconazole had failed to lower cortisol levels, the patient started receiving infused etomidate, an inhibitor of the enzyme 11‐beta‐hydroxylase that prevents cortisol synthesis.

    This treatment was stopped one day before the bilateral removal of the adrenal glands as a definitive treatment for the elevated production of cortisol.

    Read more at https://cushieblog.com/2018/05/18/etomidate-found-effective-in-severe-cushings-syndrome/

  19. Register now for the 10th Annual Johns Hopkins Pituitary Patient Day

    Saturday, October 13, 2018, 9:00 a.m. to 3:00 p.m.

    More info at https://cushieblogger.com/2018/05/18/tenth-annual-johns-hopkins-pituitary-patient-day/

     

     

     

  20. Based on long-term patient outcomes, researchers were able to identify six categories of common diagnostic and surgical failures. They include:

    • persistently high cortisol levels despite the successful removal of lesions
    • the failure of tumor resection
    • recurrence of disease
    • a failure to identify the source of ACTH secretion
    • the absence of identifiable lesions during exploratory surgery
    • concurrent tumors.

    Read more at https://cushieblog.com/2018/05/16/study-describes-6-common-surgical-failures-in-cushings-disease-treatment/

  21. Every ache or pain or out of the ordinary experience triggers anxiety. I am 7 years post op. I don’t have panic attacks per se, but I do get upset and frightened. These feelings also occur when the doctor sends me for routine testing just to make sure there is no relapse...

    In the comments area of https://cushieblogger.com/2018/05/11/guest-question-ptsd-and-cushings/

  22. Relacorilant, an investigational therapy developed by Corcept Therapeutics, may effectively manage the effects of excess cortisol in patients with Cushing’s syndrome, interim data from an ongoing Phase 2 trial show.

    In particular, the treatment significantly improved sugar tolerance and the levels of osteocalcin, a bone growth biomarker  commonly suppressed by excess cortisol.

    Read more at https://cushieblog.com/2018/05/12/relacorilant-effectively-manages-cortisol-effects-in-cushings-patients/

  23. I’m wondering if anyone post surgery is dealing with PTSD, specifically feeling like you are re-experiencing Cushings when you are having anxiety. I’m almost 3 years post surgery and have regular panic attacks where I feel like I am re-living having the disease

    Please either respond here or in the comments at https://cushieblogger.com/2018/05/11/guest-question-ptsd-and-cushings/

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  24. Today I challenge a wonderful woman who I really admire Mary Kelly O'Connor who can disregard if she's already been tagged or doesn't want to take part (completely understand as I know these posts can be annoying) but I just wanted to select you because as the founder of the website www.cushings-help.com that saved my life when I was diagnosed and I made some wonderful life-long friends all across the World as a result. I am so glad I found that website and the beautiful souls that shared their stories and wealth of knowledge.

    Read more at https://cushieblogger.com/testimonial/diane/

  25. Sadly, we lost another Cushing’s patient on Friday, May 9, 2014.  Melinda was a member of the Cushing’s Help message boards since Jun 24,  2007.

    She was only 25 and left behind a young son and many loving family members.

    Read more at https://cushingsbios.com/2015/05/09/in-memory-of-melinda-smith-1988-2014/

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