CushieBlog

Cushing’s Help RSS Feed

• ⭐️ Top PIcks on the Message Boards updated January 18, 2020
  Top content from across the community, hand-picked by MaryO and the Cushing's community,
• 📰 Clinical trial: Multicenter Study of Seliciclib (R-roscovitine) for Cushing Disease
  This phase 2 multicenter, open-label clinical trial will evaluate safety and efficacy of 4 weeks of oral seliciclib in patients with newly diagnosed, persistent, or recurrent Cushing disease.
• 🔵 Cushing's Help Guest Forum
  The Guest Forum has returned on a trial basis.  At the moment, new guest questions are not moderated.
• ✍️ Comment added to Stefanie, Pituitary Bio
  Hi Stefanie I would be happy to talk or email which ever is more convenient. I have pituitary cushings. 2 surgeries later last one oct 2019 I seem to be doing good so far.
• 📰 Pasireotide Reduces Pituitary Tumor Volume in Cushing’s Disease
  Five children had Cushing’s disease (mean age, 14 years; two girls), including one macroadenoma. Those with Cushing’s disease presented with obesity (100%), short stature (60%) and headache (40%). Transsphenoidal resection resulted in biochemical cure; however, two patients experienced relapse 3 and 6 years after surgery, respectively, requiring radiotherapy […]
• 🖤 In Memory: Lori Holt ~ January 6, 2008
  During the first few days of September 2007, Lori had surgery to remove her adrenal gland. She experienced extreme difficulty post surgery and never recovered.
• 🖤 In Memory: Jill's Father. January 5, 2005
  Jill wrote: 'In December 2004 my dad who had addison's for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison's for 22 hours, which they were complete […]
• 📰 Long-Term Obesity Persists Despite Pituitary Adenoma Treatment In Childhood
  Five children had Cushing’s disease (mean age, 14 years; two girls), including one macroadenoma. Those with Cushing’s disease presented with obesity (100%), short stature (60%) and headache (40%). Transsphenoidal resection resulted in biochemical cure; however, two patients experienced relapse 3 and 6 years after surgery, respectively, requiring radiotherapy […]
• 📰 BIPSS Diagnostic Method May Cause False Positive in Some Cases of Cyclic Cushing’s Syndrome
  A diagnostic technique called bilateral inferior petrosal sinus sampling (BIPSS), which measures the levels of the adrenocorticotropic hormone (ACTH) produced by the pituitary gland, should only be used to diagnose cyclic Cushing’s syndrome patients during periods of cortisol excess, a case report shows. When it is used during a spontaneous remission period […]
• ✍️ Alicia, PCOS Bio
  Alicia is from California. She is 18 and has been diagnosed with PCOS but it does not explain all of her symptoms. She used to be super athletic and played 3 sports. She got my period at 13 and it was regular. However, she started losing her periods...
• 📞 Webinar: Management of Recurrent Pituitary Tumors
  Upon completion of this webinar, participants should be able to: Recognize the role for surgery in treating recurrent adenomas Understand the risk and role of radiosurgery for treatment of recurrent Identify treatment indications for recurrent adenomas.
• 📰 Risk for thrombotic events high after Cushing’s syndrome surgery
  Fleseriu cautioned that the findings do not necessarily suggest that every individual with Cushing’s syndrome needs anticoagulation therapy, as the study was retrospective. Additionally, sex, age, BMI, smoking status, estrogen or testosterone supplementation, diabetes and hypertension — all known factors for increased thrombosis risk among the general popula […]
• 🖤 In Memory: Judy Kennedy - December 15, 2019
  Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.
• ✍️ MaryO, 32nd Pituitary Surgery Anniversary
  Today is the 32nd anniversary of my pituitary surgery at NIH. As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
• ✍️Comment added to Can You Help? Legal Assistance for Cushing's Patients
  ...I pray for the day they will find out what this disease is all about and why some people get better and others never really recover although their adrenal seems to be normal several symptoms are still very much present. Being called mentally challenged because we would just like to be like a normal person it is hurtful and discouraging at times.
• ✍️Comment added to Can You Help? Legal Assistance for Cushing's Patients
  I was wondering if there’s a way tio get body lift surgery paid for by insurance. I had my tumor removed and lost a lot of weight and have a lot of extra skin...
• ❓Can You Help? Legal Assistance for Cushing's Patients
  I believe I need legal assistance related to i humane treatment by city and/or county officials. I can explain further, if need be, once I find out if it’s even possible to get help. And I certainly cannot afford to pay an attorney, since my income is SSD (Disability), which is low and fixed, which has been the case since Cushing’s reared it’s remorseless, d […]
• 🖤 In Memory: Bonny Hamm, October 12, 2009
  She was only 45 at the time of her death October 12, 2009. I’ve known far too many Cushies who have died far too young from this disease. Bonny wrote July 1, 2009 I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumour removed in June 2007. The recovery was long and hellish. Th […]
• 🖤 In Memory: Barbara "Cookie" Rothenberg, October 11, 2003
  Cookie died October 11, 2003. She had a pituitary tumor, recurrence, BLA, PCOS, radiation... Cookie touched a lot of lives. I would get these perky, cheerful and witty emails. It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come. She loved people and wanted to make a difference in the lives […]
• 🖤 In Memory of Lenise Petersen, October 2, 2002
  Lenise passed away at 23 years old, just after her pituitary surgery.