🩓 Tomorrow, Tomorrow!

One-day-to-go

What’s this about? More info here.

Growth Hormone Study Opportunity

 

Here’s your chance to make your voice heard on Growth Hormone Issues.

Anyone interested would sign up with Rare Patient Voice using the CushingsHelp referral Link. You would then get an email invite to the actual study.
Study Opportunity for Idiopathic Short Stature (ISS) Caregivers
This is a 30 min online survey and Compensation is $50
Please sign up at the link below for more information or to see if you qualify

🩓 It’s Time to Sign Up for the Cushing’s Awareness Challenge 2021

I plan to do the Cushing’s Awareness Challenge again. A past year info is here:  https://cushieblogger.com/2018/03/11/time-to-sign-up-for-the-cushings-awareness-challenge-2018/

The original page is getting very slow loading, so I’ve moved my own posts to this newer blog.

As always, anyone who wants to join me can share their blog URL with me and I’ll add it to the links on the right side, so whenever a new post comes up, it will show up automatically.

If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc.  If you have photos, and you give me permission, I’ll add them to the Pinterest page for Cushing’s Help.


The Cushing’s Awareness Challenge is almost upon us again!
Do you blog? Want to get started?
Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Tenth Annual Cushing’s Awareness Blogging Challenge.
All you have to do is blog about something Cushing’s related for the 30 days of April.
There will also be a logo for your blog to show you’ve participated.
Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing’s Help Facebook Groups, on the message boards or an email  and I will list it on CushieBloggers (  http://cushie-blogger.blogspot.com/ )
The more people who participate, the more the word will get out about Cushing’s.
Suggested topics – or add your own!
  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease
.(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them
.
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because

  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I

  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts
?
maryo colorful zebra

💉 Helpful Neurosurgeon: Pennsylvania

Lehigh Valley, Pa.,
March 03, 2021

Walter Jean, MD, has joined Lehigh Valley Health Network (LVHN) and will serve as Chief of Neurosurgery.

Jean is a board-certified neurosurgeon with expertise in complex intracranial surgery. He is known world-wide for his expertise in complex brain surgery. With nearly 20 years’ experience in both open and endoscopic skull base surgery, Jean has several clinical interests including acoustic neuromas, pituitary adenomas, skull base meningioma, intraventricular tumors, and trigeminal neuralgia. His acclaimed textbook, “Skull Base Surgery: Strategies,” is used by neurosurgeons across the globe to learn about open and endoscopic skull base surgery.

“I’m excited to join LVHN and continue to build on their solid foundation,” Jean says. “I hope to take LVHN Neurosurgery to the next level with robust clinical activity, research and innovation as well as education.”

As a pioneer, Jean utilizes virtual reality in neurosurgery.

“Virtual reality allows everyday people to fly to new lands in video games, augmented reality takes fighter pilots through scenarios training them for the unexpected,” Jean says. “Now brain surgeons and patients can also use these technologies to fly through the brain.”

Why is this so important? Jean says for those who find themselves in need of complex brain surgery, not only can they better visualize their upcoming procedure, their surgeon also gains additional insight. Jean is the only physician in the area using this groundbreaking technology.

“We meet hundreds of patients and explain to them our surgical plan,” Jean says. “That communication can be difficult at times. Once we have a patient’s brain scans loaded into the augmented reality software, they have the ability to see their own anatomy to gain a better understanding. When patients place the headset over their eyes, they are transported to a virtual replica of their own brain.”

The experience offers a visual explanation which is often easier to understand than medical terminology.

Another benefit of this leading-edge technology is that it allows brain surgeons create a surgery plan by simulating different scenarios to find the best approach. “The genesis of the technology is from air fighter pilots. The founders of the company discovered they could use the same technology in the medical field,” Jean says. “Just like fighter pilots, brain surgeons are able to practice unique scenarios to be fully prepared for their mission.”

Jean comes to LVHN from George Washington University Hospital, where he was a professor of neurological surgery. A native of Hong Kong, Jean attended Princeton University, where he graduated summa cum laude, and Cornell University Medical College, where he graduated at the top of his class and was elected Alpha Omega Alpha, a medical honor society. He completed neurosurgical training at the University of Minnesota, and fellowship in Skull Base Surgery at the University of Cincinnati.

Jean’s academic credentials includes being Program Director at Georgetown University for 7 years. He has authored numerous scholarly publications and has an international reputation as an energetic lecturer and passionate teacher of neurosurgery. Jean serves as reviewer for many high-impact journals such as the Journal of Neuro-Oncology, World Neurosurgery, Operative Neurosurgery, and Journal of Neurological Surgery, Part B. He is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons and the North American Skull Base Society and serves frequently as faculty at their national meetings.

📞 eSummet: Quality of Life of Pituitary Patients

Register Now! 2nd annual WAPO eSummit March 19 & 20, 2021
World Alliance of Pituitary Organizations represents the voice of 37 patient advocacies around the globe. This event is also translated into Español, there’s something for everyone!

The World Alliance of Pituitary Organizations (‘WAPO’) represents the voice of 37 patient advocacies around the globe.

We seek to empower and improve the Quality of Life of Pituitary Patients, by sharing knowledge and inform you about treatment choices.

By registering to the WAPO eSummit 2021, you will have a unique opportunity to learn about the latest medical research, raise questions and dialogue with international experts on the pituitary gland!

Get involved and register in one of the provided languages.

We are looking forward to meeting you!

For more information visit the link below.

📞 Cushing Syndrome and COVID-19

About

Who Should Attend: Individuals with Cushing’s disease and their caregivers.

When: Thursday, March 4, 2021, 6 PM, Eastern

Where: Virtual presentation via Zoom. Click the Zoom link for the online event or call one of the phone numbers below:

833-548-0276 (US Toll-free)
833-548-0282 (US Toll-free)
877-853-5257 (US Toll-free)
888-475-4499 (US Toll-free)

Whether you log on via computer or telephone, you will be asked for the meeting ID and password.

Meeting ID: 969 3392 7432
Passcode: 945590

Attendees will be muted until the end of the presentation, at which time we will take questions.

There is no fee for this event.

Contact Maggie Bobrowitz with any questions: Margaret.Bobrowitz@DignityHealth.org or (888) 726-9370.

💙 Post-Op Pituitary COVID Injection 1

 

Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection will be March 15.


January 12, 2021 my Mom’s doctor called and offered her the vaccine but she didn’t want it. She said she didn’t go anywhere.  True but my DH and I do – and she has a friend visit once a month.  I joked to a friend that I could put on a wig and go as her since we have the same first name.

I have been doing the COVID-19 Patient Monitoring System through my doctor’s office since it was first offered.  Just a few boxes of how I’m feeling, if I wore a mask and so on.  I am a strong believer in helping to participate in medical trials, as I mention below.  This one is very easy and takes about a minute out of my day.  Easy-peasy.

I’ve been on the Fairfax Waiting List since January 19, 2021.  As of right now, they are still scheduling people from January 18 – I read somewhere that 41,000-some people registered on the 18th, so it may be a while to get to my date.  They have set up an interesting dashboard to track how things are going  https://www.fairfaxcounty.gov/health/novel-coronavirus/vaccine/data

I got a link from a friend when CVS opened up clinics in my state – https://www.cvs.com/vaccine/intake/store/covid-screener/covid-qns

I kept the CVS link open and checked it every morning.  Everything was full until Saturday, February 13.  I was able to register at about 5 am.  When I went back about 20 minutes later, everything was gone.

 

CVS sent out an informative email with directions, dates, ics file to easily add to calendar,

On the day of your appointment:

‱Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.

‱Bring your ID and insurance card, voucher or other coverage

‱Don’t forget a face covering—wearing it throughout your visit is required

‱When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine

CVS tips for vaccine shots:

‱Wearing short sleeves makes getting a shot easier and faster

‱If you must wear long sleeves, dress in layers with the short sleeves underneath

‱ Review the patient fact sheet about the specific vaccine you are receiving

What to do if you feel sick or have COVID-19 symptoms:

‱Contact your health care provider immediately

‱If your provider recommends it, get tested for COVID-19

‱ Cancel your appointment

‱Don’t come to the pharmacy

‱Schedule a new appointment when you’re well

After your vaccine:

‱Be prepared to stay for 15 to 30 minutes after the COVID-19 vaccination so you can be observed for side effects.

‱If you experience side effects from your COVID-19 vaccine dose, you may find some guidance at Coronavirus: Vaccine, Prevention Tips & FAQs

‱The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.

And a short survey, which I took – just add up to 5 stars and write a short paragraph.

Monday, February 15, 2021: When I got to CVS, I found that everything was very well run.

I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.

I was met by someone at door who checked my name – I showed him my phone screen – he showed me where to walk following arrows on floor.  Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).

There were 4 people ahead of me that I could see.  It went very fast.  I was in the little room within less than 10 minutes.

The nurse asked if left arm was ok to use.

She told me to treat the little quarantine form like gold.  Take a picture on my phone, just in case.  Maybe laminate after second shot.  Keep it with passport.

She said that old folks (like me!) didn’t have as many issues after second shot.

The shot was very fast – I never felt it.

The nurse said if I get a headache, take Tylenol only.  I said that was all I could take anyway because I have only one kidney.

I sat in the waiting area for 15 minutes to be sure there were no problems  There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.

I was glad to see that it was Moderna (MRNA) although I would have taken either.  I have a long-standing issue with the other drug company, unrelated to COVID vaccines.

I posted on FB that I had done my first injection and a friend told me about registering at vsafe.cdc.gov for them to keep track of me after the vaccination.  I signed up for that right away – and I noticed that CVS had also given me that link.

About 12 hours later (3:30 am) I got up to go to the bathroom and noticed that my arm was a little sore. No biggie.

Tuesday, February 16, 2021:  I just got my first dose of Moderna yesterday – sore arm, so far.

The nurse told me yesterday that older people like myself (I’m 72) had fewer side effects since we had been exposed to more things over the years.  I’m not sure how accurate that is but I’ll hold on to that hope until I get my second dose on March 15!

Wednesday, February 17, 2021:  I had weird dreams overnight but I got up about 4:00 am.  I did some work and fell back asleep until 10:15.

We didn’t go to water exercise. I decided at the very last minute, walking out the door. Reaction to Monday shot?  I had a little headache, dizzy, congested, very tired.  I should have taken more cortisone at this time but didn’t remember until 8:30 pm.

I slept more until about 2 pm and had very weird dreams – I don’t know if the dreams are part of it or not but I reported them to the safe.cdc.gov questionnaire.

I cancelled piano lessons for the day.  I wrote to my students:

I am so sorry but I need to cancel today’s lesson.  I had the first COVID vaccination on Monday afternoon.  I was feeling fine yesterday so I assumed that I wasn’t going to have any side effects but they caught up with me today.  It’s just a headache , a bit of congestion and fatigue (I’ve been sleeping all day so far) but I don’t think I would be at my best during XXX’s lesson.

See you next week


After cancelling lessons, I went back to sleep until time for Pender’s 7 pm Ash Wednesday service.  I was felling cold but I don’t know if it was chills or really a cold.  I started coughing a little.

At night, I remembered I should have up-dosed. I told my DH that night if he ever noticed me like this again, it was the perfect time to tell me to stress dose.  It never occurred to me during the day.

At that point, I realized I hadn’t eaten all day.  I had dinner (I was surprised that I could eat it) at 9:25 and did my growth hormone injection.

I went to bed at 11 p.

Thursday, February 18, 2021: I’m a little more tired than usual but ok.  I spent time napping and working alternated through the day.

Friday, February 19, 2021: Just the normal tiredness.  Hooray!


Info below from https://medshadow.org/covid19-vaccine-side-effects/  I’ve had the bold ones so far after the first injection.

Moderna

Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.

In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.

A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.

Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.

Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.

The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.

A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.

Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.

This page has information about the other brands of vaccine: https://fairfaxcountyemergency.wpcomstaging.com/2021/02/16/what-you-need-to-know-when-you-get-vaccinated-and-after-you-get-vaccinated/

$$$ Attention Cushing’s Patients ~ Patient Advisory Board $$$

Cushing’s Syndrome Patient Advisory Board: Patient Qualifier

Virtual Patient Panel for Cushing’s Syndrome Patients
Patients that are accepted will be compensated for their participation.

Q1: Are you a U.S. Citizen and at least 18-years or older?

Q2: Have you been diagnosed with Cushing’s Disease (CD) or endogenous Cushing’s syndrome (CS)?

Q3: Did your doctor find a tumor on your Pituitary Gland?

Q4: You must currently be taking a prescription medication to treat your Cushing’s. The medication must include ONE of the following:

  • ketoconazole
  • ISTURISAÂź (osilodrostat)
  • KORLYMŸ (mifepristone)
  • SIGNIFORŸ (pasireotide), OR SIGNIFORÂź -LAR (pasireotide).

Q5: You must have been on your current medication for at least 1-month (ISTURISA-only), and all other Cushing’s medications for ≄3-months.

If you answered all the questions YES and are taking a prescription medication to treat your Cushing’s, please contact:
KIRSTEN YORK, Vice President of Discovery, at ENTRADA.