📺 NIH: Discovery Channel’s Documentary Series ‘First In Human’

Unprecedented Access Inside the National Institutes of Health’s Building 10
Premieres August 10

Directed by EmmyÂŽ Winner John Hoffman; Produced by McGee Media

Near the nation’s capital, on the campus of the National Institutes of Health, sits Building 10: the largest hospital in the world devoted solely to research. Inside, our country’s most brilliant scientific minds carry out some of medicine’s riskiest and most critical research, testing new treatments in people for the very first time.

With unprecedented access to the halls of Building 10, First in Human reveals for the first time how the medical breakthroughs of tomorrow make their way out of the hi-tech research laboratories and into the hands of our world’s medical professionals. The series explores the lives of the doctors, researchers, and patients who together make progress possible in this cutting-edge testing ground. Narrated by Emmy,® Golden Globe®, and Critics Choice® winning actor Jim Parsons (“The Big Bang Theory,” “Hidden Figures,”) directed by Emmy winner John Hoffman, and executive produced by Hoffman and Emmy winner Dyllan McGee, the three-part documentary series begins airing in August 10 at 9pm ET/PT exclusively on Discovery.

Because the treatments they’re testing are so new and their outcomes are entirely unknown, the doctors leading first in human trials at Building 10 can only partner with patients who have exhausted the options the medical establishment has to offer. This doctor-patient partnership is utterly unique to medicine: live or die, each of these brave “first in human” volunteers immediately becomes part of medical history. Previous trials in the building led to the development of modern chemotherapy treatments, the first treatments for HIV/AIDS, and the first successful gene therapy.

First In Human represents the first time cameras have embedded in Building 10 and followed first in human patients throughout their entire trial. This unique access is the product of Hoffman’s nearly twenty years of filmmaking in partnership with the NIH on projects such as The Alzheimer’s Project and The Weight of the Nation.

“NIH’s Building 10 has given generations hope when they need it most,” comments Rich Ross, Group President, Discovery Channel, Animal Planet, Science Channel, and Velocity.  “We are proud that the NIH has invited Discovery inside their doors for an unvarnished look at how these brave men and women work hand in hand with their doctors and technologists to seek cures to the most confounding diseases that exist.”

“Because of the very nature of first in human trials, most of the patients who enter Building 10 to enroll in them are remarkably unique: all standard care out in the world has failed them,” says Hoffman. “What was most powerful about embedding in Building 10 and following these trials was observing how the doctors and patients came to rely on each other in a true partnership to advance medicine.”

States Parsons, “I know that everyone who watches First in Human will feel the same sense of pride I did when I discovered this incredible institution that our country created. I hope viewers will share the sense of gratitude and awe that I felt when learning about the human beings who bravely put their lives in the hands of some of our most innovative scientists and doctors as they search together for the medicines and cures that give all of us fuller, longer lives. This is truly the story of how we, as human beings, function: both at an elemental level and at our most profound.”

“The NIH Clinical Center’s more than 60-year history has resulted in remarkable medical advances, from the first use of chemotherapy to treat cancer, to the development of the technique to keep the blood supply clean and safe from viruses,” said NIH Director Francis S. Collins, M.D., Ph.D. “For millions of patients around the world, it is known as the National Institutes of Hope.”

From leukemia to sickle cell disease to the rarest diseases on the planet, First in Human captures the stories of the doctors, researchers, staff, and, most importantly, the patients and families in this remarkable facility that together are pushing far into the unknown.

FIRST IN HUMAN is produced by McGee Media for Discovery Channel.  The series is directed by John Hoffman; produced by, John Hoffman, Beth Wichterich, and Michael Epstein; narrated by, Jim Parsons; executive producers Dyllan McGee, Jim Parsons, Todd Spiewak, and Eric Norsoph; producer, Jon Bardin; supervising producer, Stacia Thompson; senior editor, Adriana Pacheco; director of photography, Simon Schneider.  For Discovery Channel, supervising producer, Jon Bardin; executive producer, John Hoffman.

 

From https://corporate.discovery.com/discovery-newsroom/jim-parsons-set-to-narrate-discovery-channels-documentary-series-first-in-human-the-trials-of-building-10/

Day 25: Cushing’s Awareness Challenge 2017

So often during the diagnosis phase of Cushing’s I felt like this picture – I was walking alone to an unknown place with an unknown future.

My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors.  In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends.  My first hope was from a magazine (see Day Twenty-nine, last year)

After I got that first glimmer of hope, it was off to the library to try to understand medical texts.  I would pick out words I did understand – and it was more words each trip.  I made Xerox copies of my findings to read at home and try to digest. (I still have all those old pages!)

All my research led me to Cushing’s.

Unfortunately, the research didn’t lead me to doctors who could help for several years.  That contributed greatly to the loneliness.  If a Doctor says you’re not sick, friends and family are going to believe the doctor, not you.  After all, he’s the one trained to know what’s wrong, or find out.

I was so grateful when I finally got into a clinical trial at NIH and was so nice not to be alone with this mystery illness.  I was also surprised to learn, awful as I felt, there were Cushies much worse off than I was.

I am so glad that the Internet is here now helping us all know that we’re not alone anymore.

 

We’re all in this together with help, support, research, just being there.  I love this quote from Catherine at http://wheniwasyou.wordpress.com/2012/03/31/wheniwasyou/

Mary, I am delighted to see you here. Cushings – because of the persistent central obesity caused by (we know now) the lack of growth hormone plus the hypothyroidism I was diagnosed with (but for which treatment was ineffective due to my lack of cortisol) – was one of the things I considered as an explanation for my symptoms. Your site was enormously educational and helpful to me in figuring out what might be happening to me. Those other patient testimonies I referred to? Many of them were the bios you posted. Thank you so much for commenting. I am so grateful for the support and encouragement. I really hope that my experiences will help other undiagnosed hypopituitary patients find their way to a diagnosis. I often used to dream that one day I’d get to say to others what was so often said to me: don’t give up, there will be an answer. I kept believing in myself because people I hadn’t even met believed in me. Now I am finally here and I do hope my story will help others to have faith in their own instincts.

Thanks again. Please do keep in touch.

Catherine

Day 23: Cushing’s Awareness Challenge 2017

sunday-glitter

 

 

It’s Sunday again, so this is another semi-religious post so feel free to skip it 🙂

I’m sure that many would think that Abide With Me is a pretty strange choice for my all-time favorite hymn, especially since it often shows up at funerals and memorial services.

My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.

Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches.  The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.

So, some of my “favorite hymns” are those that I sang when I was out with my Dad.  Fond memories from long ago.

In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years.  I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.

I was terrified and sure that I wouldn’t survive the surgery.

Somehow, I found a 3-cassette tape set of Reader’s Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.

At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.

When I had my kidney cancer surgery, those tapes were long broken and irreplaceable, but I had replaced all the songs – this time on my iPod.

Abide With Me was on this original tape set and it remains a favorite to this day.  Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700.  When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them.  I sign page 700.

I think that many people would probably think that this hymn is depressing.  Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.

This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.

If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.

~John 15:7

Abide With Me

Words: Henry F. Lyte, 1847.

Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:

This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.

Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:

O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.

For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.

Abide with me; fast falls the eventide;

The darkness deepens; Lord with me abide.

When other helpers fail and comforts flee,

Help of the helpless, O abide with me.

Swift to its close ebbs out life’s little day;

Earth’s joys grow dim; its glories pass away;

Change and decay in all around I see;

O Thou who changest not, abide with me.

Not a brief glance I beg, a passing word;

But as Thou dwell’st with Thy disciples, Lord,

Familiar, condescending, patient, free.

Come not to sojourn, but abide with me.

Come not in terrors, as the King of kings,

But kind and good, with healing in Thy wings,

Tears for all woes, a heart for every plea—

Come, Friend of sinners, and thus bide with me.

Thou on my head in early youth didst smile;

And, though rebellious and perverse meanwhile,

Thou hast not left me, oft as I left Thee,

On to the close, O Lord, abide with me.

I need Thy presence every passing hour.

What but Thy grace can foil the tempter’s power?

Who, like Thyself, my guide and stay can be?

Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;

Ills have no weight, and tears no bitterness.

Where is death’s sting? Where, grave, thy victory?

I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;

Shine through the gloom and point me to the skies.

Heaven’s morning breaks, and earth’s vain shadows flee;

In life, in death, O Lord, abide with me.

Day 16: Cushing’s Awareness Challenge 2017

Because it’s a Sunday again, and Easter, this is a fairly religious post…

After I was finished with the Cushing’s long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who preached the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

I thought I had written down the scripture reading carefully. I practiced and practiced. I don’t like speaking in front of a crowd but I said I would. When I got to church, the reading was different from what I had practiced. Maybe I wrote it down wrong, maybe someone changed it. Whatever.

The real scripture turned out to be Psalm 116. I got very emotional while reading this and started crying when I got to verse 8:

For you, O LORD, have delivered my soul from death“.

Others in the congregation who knew part of my story were very moved, too.

psalm-116-1-4

Psalm 116 (New International Version)

1 I love the LORD, for he heard my voice;
he heard my cry for mercy.

2 Because he turned his ear to me,
I will call on him as long as I live.

3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.

4 Then I called on the name of the LORD:
“O LORD, save me!”

5 The LORD is gracious and righteous;
our God is full of compassion.

6 The LORD protects the simplehearted;
when I was in great need, he saved me.

7 Be at rest once more, O my soul,
for the LORD has been good to you.

8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,

9 that I may walk before the LORD
in the land of the living.

10 I believed; therefore I said,
“I am greatly afflicted.”

11 And in my dismay I said,
“All men are liars.”

12 How can I repay the LORD
for all his goodness to me?

13 I will lift up the cup of salvation
and call on the name of the LORD.

14 I will fulfill my vows to the LORD
in the presence of all his people.

15 Precious in the sight of the LORD
is the death of his saints.

16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.

17 I will sacrifice a thank offering to you
and call on the name of the LORD.

18 I will fulfill my vows to the LORD
in the presence of all his people,

19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.

 

This Psalm has come to have so much meaning in my life.

When I saw a book called A Musician’s Book of Psalms each day had a different psalm. “My” psalm was listed as the reading for my birthday, so I had to buy this book!  For a while, it was the license plate on my car.

I used to carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver but now I have this info on my phone and iPad.

On the other side there is an article I found after my kidney cancer.  You can read that article in yesterday’s post.

 

Day 14: Cushing’s Awareness Challenge 2017

UVA 2004
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos!

As early as 2001 (or before) my pituitary function was dropping.  My former endo tested annually but did nothing to help me with the symptoms.

In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.  Needless to say, I left his office in tears, again.

Fast forward 2 years to 2004.  I had tried for a while to get my records from this endo. He wouldn’t send them, even at doctors’ or my requests.

I wanted to go see Dr. Vance at UVa but I had no records so she wouldn’t see me until I could get them.

Finally, my husband went to the former endo’s office and threatened him with a court order. The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001 including weeks and weeks at NIH and pituitary surgery, that didn’t seem like enough records to me.

In April of 2004, many of us from the message boards went to the UVa Pituitary Days Convention. That’s where the picture above comes in.  Other pictures from that convention are here.

By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me later. In the email, she asked how I was doing. Usually I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests (ITT). From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 17 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I went back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He said that I would end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, in November 2004, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we had to appeal on Monday. My local insurance person also worked on an appeal, but the whole thing was just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving.

As it turned out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Was I going to be a guinea pig again?

The new GH company assigned a rep for me, submitted info to the pharmacy, and waited for insurance approval, again.

I finally started the Growth Hormone December 7, 2004.

Was the hassle and 3 year wait worth it?  Stay tuned for April 22, 2017, when all will be revealed.

Read Dr. Barbara Craven’s Guest Chat, October 27, 2004

Thanks for reading 🙂

MaryO

Day 13: Cushing’s Awareness Challenge 2017

In March of 1987, after the endo finally confirmed that I had Cushing’s, I was sent to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer floor.

When I left this hospital after a week, we didn’t know any more than we had before, except I found out that my brain cancer roommate had died.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a French-speaking hospital in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection.

My husband asked my endo if it were his wife, if he would recommend this surgery.  The endo responded that he was divorcing his wife – he didn’t care what happened to her.  Oh, my!

I chose NIH – closest and free. After I was interviewed by the doctors there, I got a letter that I had been accepted into the clinical trial.

The night before I was admitted, I signed my will.  I was sure I was going to die at NIH.  If not during testing, as a result of surgery.  The scary this is that I didn’t really care.  I’d rather take this chance than continue to live with Cushing’s.

The first time I was there was for 6 weeks as an inpatient. More of the same tests, except for one that they don’t do anymore.  I guess it didn’t really work for Cushing’s.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were going bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Several were from Greece.

My first roommate was a nurse.  She spent the entire first night screaming in pain.  I was very glad when they moved me to a new room!

Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with – either a cure or dying. While I was at NIH, I was gaining about a pound a day!

During the time I was home the weekend before surgery, a college classmate of mine (I didn’t know her) DID die at NIH of a Cushing’s related problem. I’m so glad I didn’t find out until reading the alumnae magazine a couple months later!  She was the same class, same major, same hometown, same disease…

We have a Scottish doctor named James Lind to thank for the clinical trial.  He conducted the first ever clinical trial in 1747 and developed the theory that citrus fruits cured scurvy.  Lind compared the effects of various different acidic substances, ranging from vinegar to cider, on groups of afflicted sailors, and found that the group who were given oranges and lemons had largely recovered from scurvy after 6 days.

I’d like to think that I advanced the knowledge of Cushing’s at least a little bit by being a guinea pig in 1987-1989.

From the NIH: http://endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx

Hope through Research

Several components of the National Institutes of Health (NIH) conduct and support research on Cushing’s syndrome and other disorders of the endocrine system, including the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke, the National Cancer Institute, and the National Center for Research Resources.

NIH-supported scientists are conducting intensive research into the normal and abnormal function of the major endocrine glands and the many hormones of the endocrine system. Researchers continue to study the effects of excess cortisol, including its effect on brain structure and function. To refine the diagnostic process, studies are under way to assess the accuracy of existing screening tests and the effectiveness of new imaging techniques to evaluate patients with ectopic ACTH syndrome. Researchers are also investigating jugular vein sampling as a less invasive alternative to petrosal sinus sampling. Research into treatment options includes study of a new drug to treat the symptoms of Cushing’s syndrome caused by ectopic ACTH secretion.

Studies are under way to understand the causes of benign endocrine tumor formation, such as those that cause most cases of Cushing’s syndrome. In a few pituitary adenomas, specific gene defects have been identified and may provide important clues to understanding tumor formation. Endocrine factors may also play a role. Increasing evidence suggests that tumor formation is a multistep process. Understanding the basis of Cushing’s syndrome will yield new approaches to therapy.

The NIH supports research related to Cushing’s syndrome at medical centers throughout the United States. Scientists are also treating patients with Cushing’s syndrome at the NIH Clinical Center in Bethesda, MD. Physicians who are interested in referring an adult patient may contact Lynnette Nieman, M.D., at NICHD, 10 Center Drive, Room 1-3140, Bethesda, MD 20892-1109, or by phone at 301-496-8935. Physicians interested in referring a child or adolescent may contact Constantine Stratakis, M.D., D.Sc., at NICHD, 10 Center Drive, Room 1-3330, Bethesda, MD 20892-1103, or by phone at 301-402-1998.

Day 11: Cushing’s Awareness Challenge 2017

 

Way back when we first got married, my husband thought we might have a big family with a lot of kids.  He was from a family of 6 siblings, so that’s what he was accustomed to.  I am an only child so I wasn’t sure about having so many.

I needn’t have worried.

In January, 1974 I had a miscarriage.  I was devastated. My father revealed that my mother had also had a miscarriage.  I had no idea.

At some point after this I tried fertility drugs.  Clomid and another drug.  One or both drugs made me very angry/depressed/bitchy (one dwarf I left off the image)  Little did I know that these meds were a waste of time.

Eventually,  I did get pregnant and our wonderful son, Michael was born.  It wasn’t until he was seven that I was finally, actually diagnosed with Cushing’s.

When I had my early Cushing’s symptoms, I thought I was pregnant again but it was not to be.

I’ll never forget the autumn when he was in second grade.  He was leaving for school and I said goodbye to him.  I knew I was going into NIH that day for at least 6 weeks and my future was very iffy.  The night before, I had signed my will – just in case.  He just turned and headed off with his friends…and I felt a little betrayed.

Michael wrote this paper on Cushing’s when he was in the 7th grade. From the quality of the pages, he typed this on typing paper – no computers yet!

Click on each page to enlarge.

When Michael started having headache issues in middle school, I had him tested for Cushing’s.  I had no idea yet if it could be familial but I wasn’t taking any chances.  It turned out that my father had also had some unnamed endocrine issues.  Hmmm…

I survived my time and surgery at NIH and Michael grew up to be a wonderful young man, if an only child.  🙂

After I survived kidney cancer (Day Twelve, Cushing’s Awareness Challenge 2015) Michael and I went zip-lining – a goal of mine after surviving that surgery.  This photo was taken in a treetop restaurant in Belize.

For the mathematically inclined, this is his blog.  Xor’s Hammer.  I understand none of it.  He also has a page of Math and Music, which I also don’t understand.

I know it doesn’t fit into a Cushing’s awareness post but just because I’m a very proud mama – Michael got a PhD in math from Cornell and his thesis was Using Tree Automata to Investigate Intuitionistic Propositional Logic

These days, he’s working on Wall Street, running a Math Meetup, still playing the piano…

proud-mom