Finding Ways to Deal with Post-surgery Anxieties

Post-traumatic stress disorder (PTSD) following Cushing’s disease is a real issue many of us face. However, we don’t have to let it control our lives — there are ways to cope.

Cushing’s changes us both mentally and physically. We become forgetful. We lose strength. We become someone we don’t recognize in the mirror. We lose hair on our heads and gain it everywhere else. We’re always in pain, and we’re always sick, with no end in sight (or at least it feels that way).

Some days will be trying and seem as if nothing seems to work, no matter what you do. I promise that you’re not alone, and you will make it through those days.

Following are a list of ways to deal with post-surgery scares:

  • Therapy/counseling: If you can afford it, talk with a professional about your health worries and how your anxiety affects you. It takes the burden off your caregivers who don’t like to see you suffer because they care so much.
  • Journaling: Journaling is a therapeutic and inexpensive way to let out your worries. Documenting your anxieties can help you keep track of how your thought processes are changing. Writing out your stresses is cathartic. Give it a try — if you haven’t already.
  • Yoga or any light exercise: If you’re in the early stages of recovery, you shouldn’t go straight back to the gym — working out is a stressor on the body. Light yoga, such as restorative yoga, in which you practice stretching, deep breathing, and relaxation, will help your mind and body to recover. Light walks are amazing for the brain and body post-surgery.
  • Delve into things you enjoy: Read, cook, go for walks, sit outside, etc. Do whatever feeds your soul and keeps your mind free from negative thoughts. Feeding your soul is one sure way to keep your mind and body happy and healthy.
  • Other ideas from the CushieWiki
  • Please share your ideas in the comments on this post or on the message boards

Adapted from https://cushingsdiseasenews.com/2018/10/19/cushings-post-surgery-anxieties-ptsd-post-traumatic-stress-disorder-journaling-yoga-therapy/

Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H2 2013

DUBLIN — Research and Markets  (http://www.researchandmarkets.com/research/h78zrm/pituitary_acth) has announced the addition of the “Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H2 2013” report to their offering.

‘Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H2 2013’ provides an overview of the indication’s therapeutic pipeline. This report provides information on the therapeutic development for Pituitary ACTH Hypersecretion (Cushing’s Disease), complete with latest updates, and special features on late-stage and discontinued projects. It also reviews key players involved in the therapeutic development for Pituitary ACTH Hypersecretion (Cushing’s Disease).

Scope

– A snapshot of the global therapeutic scenario for Pituitary ACTH Hypersecretion (Cushing’s Disease).

– A review of the Pituitary ACTH Hypersecretion (Cushing’s Disease) products under development by companies and universities/research institutes based on information derived from company and industry-specific sources.

– Coverage of products based on various stages of development ranging from discovery till registration stages.

– A feature on pipeline projects on the basis of monotherapy and combined therapeutics.

– Coverage of the Pituitary ACTH Hypersecretion (Cushing’s Disease) pipeline on the basis of route of administration and molecule type.

– Key discontinued pipeline projects.

– Latest news and deals relating to the products.

Reasons to buy

– Identify and understand important and diverse types of therapeutics under development for Pituitary ACTH Hypersecretion (Cushing’s Disease).

– Identify emerging players with potentially strong product portfolio and design effective counter-strategies to gain competitive advantage.

– Plan mergers and acquisitions effectively by identifying players of the most promising pipeline.

– Devise corrective measures for pipeline projects by understanding Pituitary ACTH Hypersecretion (Cushing’s Disease) pipeline depth and focus of Indication therapeutics.

– Develop and design in-licensing and out-licensing strategies by identifying prospective partners with the most attractive projects to enhance and expand business potential and scope.

– Modify the therapeutic portfolio by identifying discontinued projects and understanding the factors that drove them from pipeline.

Companies Mentioned

Isis Pharmaceuticals, Inc.

Ipsen S.A.

Novartis AG

Corcept Therapeutics Incorporated

HRA Pharma, SA

Cortendo Invest AB

Orphagen Pharmaceuticals, Inc.

For more information visit http://www.researchandmarkets.com/research/h78zrm/pituitary_acth

About Research and Markets

Research and Markets is the world’s leading source for international market research reports and market data. We provide you with the latest data on international and regional markets, key industries, the top companies, new products and the latest trends.

NIH: An Open-Label Study of The Safety, Pharmacokinetics and Pharmacodynamics of Mifepristone in Children With Refractory Cushing’s Disease

This study is currently recruiting participants.

Summary

Number 13-CH-0170
Sponsoring Institute National Institute of Child Health and Human Development (NICHD)
Recruitment Detail Type: Participants currently recruited/enrolled
Gender: Male & Female
Min Age: 6
Max Age: 17
Referral Letter Required No
Population Exclusion(s) None
Special Instructions Currently Not Provided
Keywords Child;
Cushing Syndrome;
Metabolism;
Mifepristone;
Pharmacokinetic-Pharmacodynamic
Recruitment Keyword(s) None
Condition(s) Cushing’s Syndrome;
Cushing Syndrome
Investigational Drug(s) Mifepristone
Investigational Device(s) None
Intervention(s) Drug: mifepristone
Supporting Site National Institute of Child Health and Human Development

Background:

– There are currently no approved therapies for children with Cushing’s disease who are not cured by surgery alone. A drug called mifepristone has been approved to treat adults with Cushing’s syndrome and elevated blood glucose caused by Cushing’s. The drug is marketed under the name Korlym(Registered Trademark). The study drug may have a different effect on a child’s body than an adult’s, so researchers want to know how much of the drug to give children and what effect it will have. They want to learn if mifepristone improves Cushing’s disease in children as it does in adults. They also want to know about the drug’s side effects in children.

Objectives:

– To study the effect of a medication called mifepristone in children with Cushing’s disease that has not been helped by pituitary surgery.

Eligibility:

– Children ages 6 to 17 with active Cushing’s disease following pituitary surgery and who have a body weight higher than expected for their height and age.

Design:

– Participants will be screened for up to 8 weeks with a physical exam, medical history, and medical tests including blood tests and X-rays.

– Participants will take tablets of the study drug each day for 12 weeks.

– Participants will stay at the clinic for 4 nights at the beginning of the study. They will have three 1-day visits during the study. They will stay at the clinic the last 3 days of the study.

– At these visits, participants will be given several tests. In one test, a small wire is inserted under the skin of the belly and a small monitor is attached taped to the belly. In another, the participant drinks a liquid and blood samples are taken.

– Follow-up visits will occur 4 weeks and 12 weeks after the study ends.

–Back to Top–

Eligibility

INCLUSION CRITERIAPatients who are eligible for enrollment must meet the following eligibility criteria:

– Males and females 6-17 years at informed consent

– Active Cushing’s disease as demonstrated by the following:

–24 hour Urinary Free Cortisol greater than the upper limit of normal for age on two urine collections during screening and

— midnight serum cortisol > 4.4 mcg/dL (mean of two determinations on a single day at 2330 and 2400 during screening)

– Previous trans-sphenoidal surgery (TSS) for ACTH secreting pituitary tumor at least 3 months prior to screening

– Increased body weight defined by BMI Z-score of 1.5 or above

– Able to provide consent/assent

– Able to swallow study drug tablets (not crushed or split)

– Willing to use non-hormonal method of contraception in patients of reproductive potential

– Primary health care provider in home location

EXCLUSION CRITERIA:

– Hypercortisolism not due to Cushing’s disease.

– Type 1 diabetes mellitus

– HbA1c geater than or equal to 9.5% at Screening

– Body weight < 25 kg

– Use of certain medications that are CYP3A substrates with narrow therapeutic ranges, such as simvastatin, lovastatin, cyclosporine, dihydroergotamine, ergotamine, fentanyl, pimozide, quinidine, sirolimus, and tacrolimus during the 4 weeks prior to starting study drug. Use of these medications is also prohibited until 2 weeks after end of dosing.

– Use of certain medications that are strong CYP3A inhibitors such as itraconazole, nefazodone, ritonavir, nelfinavir, indinavir, atazanavir, amprenavir, fosamprenavir, boceprevir, clarithromycin, conivaptan, lopinavir, mibefradil, posaconazole, saquinavir, telaprevir, telithromycin, and voriconazole during the 2 weeks prior to starting study drug.

Use of these medications is also prohibited until 2 weeks after end of dosing. Grapefruit and grapefruit juice are prohibited during this time frame.

– Use of certain medications that are strong inducers on CYP3A such as rifampin, rifabutin, rifapentin, phenobarbital, phenytoin, carbamazepine, St. John’s wort during the 2 weeks prior to starting study drug. Use of these medications is also prohibited until 2 weeks after end of dosing.

– Use of medications used to treat hypercortisolism from the duration indicated below prior to Day 1. Use of the medications is also prohibited until after the end of study 4 week follow up visit.

–steroidogenesis inhibitors such as ketoconazole, metyrapone: 4 weeks

–cabergoline, bromocriptine, somatostatin analogs such as octreotide, lanreotide, pasireotide long acting formulations: 8 weeks (immediate release formulations: 2 weeks)

–mitotane: 8 weeks

– Use of systemic glucocorticoid medications beginning 1 month prior to screening or anticipated use of these medications except for the treatment of adrenal insufficiency. Use of glucocorticoid medications is prohibited during the study until after the end of study 4 week study visit.

– Inflammatory, rheumatological, proliferative or other disorder(s) that would be anticipated to worsen with glucocorticoid blockade (e.g. inflammatory bowel disease, rheumatoid arthritis, psoriasis, etc.).

– Uncontrolled hypo- or hyperthyroidism.

– Uncorrected hypokalemia (< 3.5 mEq/L). The screening period may be used to correct hypokalemia prior to starting study drug. Use of potassium and/or mineralocorticoid antagonists is permitted during the study.

– QTc geater than or equal to 450 msec on Screening electrocardiogram

– Unexplained vaginal bleeding in females and/or any history of endometrial pathology.

– Positive pregnancy test in females.

From http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2013-CH-0170.html

Johns Hopkins Pituitary Patient Day 2013

Johns Hopkins Pituitary Patient Day

Join us on Saturday, September 28, 2013, for the 5th Annual Patient Education Day at the Johns Hopkins Pituitary Center.

When: Saturday, September 28, 2013
Time: 9:30 a.m.
Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions

Location of the pituitary gland in the human brain

Location of the pituitary gland in the human brain (Photo credit: Wikipedia)

Patient Education Day Agenda:
9:30 – 10:00 AM REGISTRATION
10:00 – 10:25 AM What is the pituitary gland, where it is located, what it does, and what can go wrong Gary Wand, MD
10:30 – 10:50 AM How pituitary tumors can affect your vision Prem Subramanian, MD, PhD
Vivek Patel, MD, PhD
10:50 – 11:10 AM Cushing disease journey: a patient’s perspective Stacey Hardy
11:15 – 11:40 AM Surgery for Pituitary tumors: from very tiny to very large Alfredo Quinones-Hinojosa, MD
Gary Gallia, MD, PhD
Alessandro Olivi, MD
11:40 – 12:00 PM Radiation therapy: when, why, and how Lawrence Kleinberg, MD
Kristen Redmond, MD
12:05 – 12:25 PM The medications you may be taking (new and old ones): what you need to know Roberto Salvatori, MD
12:30 – 1:25 PM Lunch
1:30 – 3:00 PM PM Round table sessions:
1) Medical therapy (Wand/Salvatori)
2) Surgical therapy (Quinones/Gallia/Olivi)
3) Radiation therapy (Redmond/Kleinberg/Lim)
4) Vision issues (Subramanian/Patel)

*This schedule is subject to change

Please R.S.V.P. by September 13, 2013, vie email (preferred) to PituitaryDay@jhmi.edu  or to Alison Dimick at 410-955-3921.

Reservations will be taken on a first-come, first-serve basis.

Research and Markets: Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review Report, H1 2013 Edition

Research and Markets(http://www.researchandmarkets.com/research/rdf6gm/pituitary_acth) has announced the addition of the “Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H1 2013” report to their offering.

‘Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H2 2013’, provides an overview of the indication’s therapeutic pipeline. This report provides information on the therapeutic development for Pituitary ACTH Hypersecretion (Cushing’s Disease), complete with latest updates, and special features on late-stage and discontinued projects. It also reviews key players involved in the therapeutic development for Pituitary ACTH Hypersecretion (Cushing’s Disease).

Scope

– A snapshot of the global therapeutic scenario for Pituitary ACTH Hypersecretion (Cushing’s Disease).

– A review of the Pituitary ACTH Hypersecretion (Cushing’s Disease) products under development by companies and universities/research institutes based on information derived from company and industry-specific sources.

– Coverage of products based on various stages of development ranging from discovery till registration stages.

– A feature on pipeline projects on the basis of monotherapy and combined therapeutics.

– Coverage of the Pituitary ACTH Hypersecretion (Cushing’s Disease) pipeline on the basis of route of administration and molecule type.

– Key discontinued pipeline projects.

– Latest news and deals relating to the products.

Companies Involved in Pituitary ACTH Hypersecretion (Cushing’s Disease) Therapeutics Development

 

  • Isis Pharmaceuticals, Inc.
  • Ipsen S.A.
  • Novartis AG
  • HRA Pharma, SA
  • Cortendo Invest AB

 

Drug Profiles: Product Description, Mechanism of Action and R&D Progress

 

  • LCI-699
  • mifepristone
  • ISIS-GCCRRx
  • Inhibitors of ACTH receptor
  • ketoconazole
  • Next Generation Cortisol Inhibitor
  • pasireotide Long Acting Release

 

For more information visit http://www.researchandmarkets.com/research/rdf6gm/pituitary_acth

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