Day 26 - Magic Foundation

So wish that my son and I could attend this together. 
Maybe it will work out next year!

Please click here to see what The Magic Foundation Convention is all about!

Anyone have plans to attend?

Day 23 - Have you read this book?

Please comment if you have read this book...  I'm going to try to find it and see what it's all about.  Amazon has it listed as 4 1/4 stars.....  the disease in the book is not called Cushing's Disease but something else that was made up.

Day 22

Pituitary

The pituitary is a pea-sized gland located at the base of the brain in the middle of the head and right below the optic nerves. It serves as the “master gland” that regulates the secretion of the majority of hormones in the body from all of the other glands, such as the thyroid and adrenal glands, as well as the ovary and testicles. The pituitary gland is divided into the anterior and posterior lobes, both of which secrete different hormones that have unique functions in the body. The anterior pituitary secretes prolactin, growth hormone and the gonadotropins, which include luteinizing hormone (LH) and follicle stimulating hormone (FSH), adrenocorticotrophic hormone (ACTH) and thyroid stimulating hormone (TSH). The posterior pituitary makes antidiuretic hormone (ADH) and oxytocin. The secretion of the hormones from the pituitary gland itself is also controlled by hormones coming from part of the brain directly above the pituitary called the hypothalamus. The hypothalamus and the pituitary gland are connected by the pituitary stalk.



Pituitary tumors result from a single cell losing the ability to control its growth. These tumors are almost always benign or non-cancerous. Very rarely can a pituitary tumor become malignant or cancerous. A tumor that is less than 1 cm in size is called a microadenoma, and a tumor that is larger than 1 cm is a macroadenoma.



Microadenomas usually do not cause symptoms related to their size, but macroadenomas can cause headaches as well as visual loss secondary to compression of the optic nerves. In addition, the normal pituitary tissue can be compressed by a macroadenoma, so deficiencies of anterior pituitary hormones can be identified on blood tests and based on symptoms. Pituitary tumors are also categorized according to their ability to make hormones and cause symptoms.

The functional tumors include those that secrete prolactin (prolactinomas), ACTH (Cushing’s disease), growth hormone (acromegaly) and TSH. Tumors that do not secrete functional hormones are called non-functioning pituitary tumors. The most common tumors in adults are prolactinomas followed by non-functioning tumors, ACTH-secreting tumors, GH-secreting tumors and TSH-secreting tumors. In children, the most common tumor is also a prolactin-secreting tumor followed by ACTH-secreting tumors, GH-secreting tumors, non-functioning tumors and TSH-secreting tumors.

Credit:  http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/endocrine/pituitary-tumor-program/pituitary-terminology.html

Day 21 - Prom

Day 20 - Micro vs. Macro

PITUITARY ADENOMA - MICRO VS MACRO DIFFERENTIATION

Pituitary adenomas constitute 10% of all intracranial neoplasms. They are classified anatomically based on size:

1. micro-adenoma if less than 10mm and
2. macro-adenoma if more than 10mm in diameter.

They are also classified functionally based on whether there are

1. secretory or
2. non-secretory.

The most common secretory macro-adenoma is the prolactinoma. Although pituitary micro-adenomas are much more common than macro-adenomas on pathologic examinations, macro-adenomas are twice as frequent on imaging studies. Macro-adenomas are the single most common suprasellar mass (1/3 to 1/2 of lesions).Prolactin-producing hypophyseal adenoma (prolactinoma) is the most common functional pituitary adenoma. Its prevalence peaks in women between 20 and 30 years of age. Hyperprolactinemia can be a cause of infertility and is associated with diminished gonadotropin secretion, secondary amenorrhea, and galactorrhea.
When a patient is suspected to have hyperprolactinemia not associated with drugs, MR imaging is the foremost and only imaging technique that can depict a pituitary adenoma.

• Most micro-adenomas have lower signal intensity than the normal pituitary gland on T1-weighted images. A convex outline of the pituitary gland or deviation of the pituitary stalk can also be detected.
• Dynamic study with intravenous bolus injection of contrast medium is the preferred technique for assessing micro-adenomas, as it allows excellent delineation between the tumour and the normal pituitary gland. In the dynamic study, the normal pituitary gland and stalk show strong enhancement in the early phase of dynamic imaging, whereas micro-adenomas show relatively weak enhancement.

Patients with macro-adenomas typically present due to mass effect symptoms rather than hormonal excess. The adenoma may extend superiorly and stretch or compress the optic chiasm, compress the infundibulum, or extend laterally into the cavernous sinus. An expanding macro-adenoma may also erode the sella turcica. The extent of the tumour can be determined by means of contrast-enhanced MR imaging. A central constriction or "waist" where the mass narrows to pass through the diaphragma sella produces a “figure 8” sign. "Invasive adenomas" may grow into the sphenoid sinus and invade the cavernous sinus. Necrosis, haemorrhage and cyst formation are common.

Day 19 - If you follow me, please 'CLICK'... 2 days left to make a difference!!!

Support Cushing’s …With A Click.

From Corcept, the makers of Korlym:
They say: “Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing’s. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing’s Support and Research Foundation and Cushing’s Help. With your support, we can aim even higher!*

Take part…and spread the word. Click here.

Day 18 - Patients Bill of Rights

Patients bill of rights

Preamble

The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders.

PNA is supported by an international network of the world's finest physicians and surgeons. Our goal is to reach every patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. We are doing this in three ways: (1) By providing public awareness programs and educational seminars, (2) By assisting the medical community in developing uniform standards for early diagnosis, surgery, radiation, pharmacological treatment and follow-up, and (3) by having interactive Web sites and referral program on these Web sites.

Our Rights

• Pituitary diseases, tumors and the resultant hormonal imbalances shall be recognized as a serious, major public health problem afflicting a large segment of the world's population.
  
  
• The financial and intellectual resources of my government and our public and private health services shall be as fairly allocated to me and my disorder as they are to any other life-threatening and life-altering disease.
  
  
• I have a right to an early and appropriate diagnosis, treatment, care and medical intervention by the experts in these fields of medicine. I have an inalienable right to be told of - and allowed to use, whenever possible, any and all medications and treatment methods past, present or future -which will complete or assist in my healing.
  
  
• Upon completion of any medical evaluation, treatment and care, I am entitled to the emotional and psychological care afforded anyone else with psycho-socially affective disorders.
  
  
• I reaffirm my right to be treated completely so I may reclaim my place in society and my family as a fully functioning and contributing member.
  
  
• I shall not be discriminated against in my workplace or any other part of society because of my physical, mental or emotional state.
  
  
• There shall not be any financial, insurance, job, or promotional stigma attached to my diseases discovery, medical care or emotional recovery. My future life shall only be limited by conditions not under man's ability to rectify.
  
  
• My family and coworkers have a right to be informed and counseled about my illness and Its many manifestations. In order for them to understand and accept the temporary limitation to my job performance and my family obligations, they must if possible, become part of my healing environment.
  
  
• I reaffirm to the world: I am a valuable member of the society and family of man. My life is too valuable to waste. It is too costly to society and too detrimental to my family to allow me to merely exist at their sufferance and largesse.

* I have the right to be believed! Just because a physician has not yet heard of, or seen, my symptoms before, does not mean they are not real and deserving of medical care and further investigation.

Credit:  http://www.pituitary.org/about/patients_bill_of_rights.aspx

Day 17 - Emotion after Diagnosis

shock     [shok]  /ʃɒk/ Show Spelled
Part of Speech:	noun
Definition:	complete surprise; blow
Synonyms:	awe, bombshell, breakdown, bump, clash, collapse, collision, concussion,confusion, consternation, crash, distress, disturbance, doublewhammy,earthquake,encounter, excitement, eye-opener,hysteria, impact, injury, jarring, jolt, percussion, prostration, ram, scare, start, stroke, stupefaction, stupor, trauma, traumatism, turn, upset, whammy, wreck

Day 16 - Cushing's in Dogs

I met a very dear person this weekend and was talking
to her about Hunter.  She asked what the name of the
disease he had was and I told her Cushing's Disease. 
She said, 'my dog had Cushing's Disease.'

I just found that to be a little funny because I swear when I
started researching and looking for any information that I
could find on the internet, I think I found more sites about
Cushing's Disease in dogs. 

Some signs that your dog may have Cushing’s disease include:
Increased water intake
Increased appetite
Incontinence or urination accidents
Muscle atrophy
Weight gain and/or pot-bellied appearance
Lethargy
Coat loses its shine/becomes dull
Difficulty climbing stairs or jumping on furniture
New susceptibility to infections, such as skin ailments
Hair loss
Hair that is extremely slow to grow back after a clipping
Thin skin
Excessive panting

Day 15 - The Pituitary Gland: Part Two

The posterior pituitary does not necessarily produce the ADH and oxytocin, the hypothalamus does this. They are produced in endocrine glands called the supraoptic nuclei and paraventricular nuclei. The axons of they hypothalamo-hypophyseal tract are what carries the information from the hormones to the posterior pituitary. They are then stored here for later use, which in turn makes the posterior pituitary more of a storage area than a type of gland.

http://lynlaukimdak.wikispaces.com/04.+Endocrinology

Day 14 - The Pituitary Gland: Part One

The pituitary gland is about the size of a pea. It is in the most inferior part of the brain and it is sits in what looks like a saddle, part of the bottom of the skull. The pituitary gland is connected to the hypothalamus by infundibulum, which looks like a stalk.There are two different parts of the pituitary gland, the adenohypophysis, anterior lobe, and the neurohypophysis, the posterior lobe.

The anterior pituitary mostly controls hormones in the body. These hormones usually end in tropin, meaning they "feed" the target cells with hormones needed for that site. They do not literally feed them but it is kind of like a homeostatic atmosphere that the anterior pituitary will keep the target cells at.

These are the hormones that the pitutary gland produces:

• growth hormones (GH- somatotropin),
• thyroid-stimiulation homones (TSH- thyrotropin),
• adrenocorticotropic hormones (ACTH- corticotropin),
• follicle-stimulating hormones (FSH- folliculotropin),
• luteinizing hormones (LH- luteotropin),
• prolactin (PRL).

The posterior pituitary has two hormones that it secretes:

• antidiuretic hormone (ADH)
• and oxytocin.

http://lynlaukimdak.wikispaces.com/04.+Endocrinology

Day 13 - More Treatments for Cushing’s Disease

(Ivanhoe Newswire) – Cushing’s disease is a hormone disorder that causes many symptoms, such as high blood pressure, fat accumulation, osteoporosis and ultimately ending in death. It is caused by a tumor in the anterior pituitary gland that secretes excess amounts of adrenocorticotrophic hormone (ACTH). The only treatment is removal of the tumor, however, researchers have found a new treatment for these reoccurring tumors.
Researchers, led by Shlomo Melmed, at Cedars-Sinai Medical Center, Los Angeles, have now identified a potential new therapeutic target -- the protein EGFR, which is the target of a drug used to treat some patients with non–small cell lung cancer (gefitinib). As discussed by Melmed and colleagues in their paper, as well as Frederic Wondisford, at Johns Hopkins University School of Medicine, Baltimore, in an accompanying commentary, the data generated in human, canine, and mouse models provide strong support to investigate the clinical effects of gefitinib in patients with Cushing disease.
SOURCE: Journal of Clinical Investigation, published online November 21, 2011 

Day 12 - Picture Timeline

Kindergarten 1999

1st Grade - 2000

2nd Grade - 2001

3rd Grade - 2002

4th Grade - 2003

5th Grade - 2004

6th Grade - 2005

7th Grade - 2006

8th Grade - 2007

9th Grade - 2008

10th Grade - 2009

11th Grade - 2010

12th Grade - 2011

Day 11 - The RIGHT Doctors

How many times have you had a dr look at your MRI and ask you why you are in the office today?  Fortunately, it has only happened to us one time.  He proceeded to tell us that all of the lab work was normal too.  I was like... REALLY...  are you kidding me???!!!  Obviously, he still had a lot to learn.  I could have looked at the scan and told you that there was obviously something there.   

Dr. G came in the room next and pulled up the picture of Hunter's MRI and showed us exactly where the regrowth of tumor was and that doing a 2nd transphenoidal surgery was the best option.  Before we left the office that day Hunter had his 2nd surgery scheduled...  Dr. P said she would not put him through another surgery again...  we would need to look at other options.  I pray to GOD everyday that that day doesn't come.

Day 10 - Hunter and his doctor

Pediatric endo, Dr. P at the University of Iowa Children's Hospital who diagnosed Hunter on his very first visit. She has been the biggest blessing out of this whole situation. Hunter and her bonded very quickly. Don't want to see the day come when he can no longer be her patient... (I mean I would love for that day to come!!! I just mean that once he is out of college he will have to see and adult endo... I hope that we can find one as caring and smart as she is!)

Day 9 - Wordle Art

Day 8 - Happy Cushing's Syndrome Awareness Day and Happy Easter!

What is Cushing's?

Cushing's Syndrome is caused by an excess of cortisol production or by excessive use of cortisol or other similar steroid hormone. When too much cortisol is produced in the adrenal glands or an excess is taken in treating other diseases significant changes occur in all of the tissues and organs of the body. All of these effects together are called Cushing's Syndrome. Cushing's disease is the name given to a type of Cushing's caused by too much ACTH production from the pituitary gland.

Spontaneous overproduction of cortisol in the adrenals is divided into two groups: those due to an excess of ACTH and those that are independent of ACTH. When the source of excess cortisol production is a tumor of the adrenal gland itself, then it is not dependent on ACTH.

What are some of the Symptoms of Cushing’s? Symptoms may include but are not limited to the following changes in body habitus: abdominal obesity, face may become more round and have a swollen appearance (moon face), increased size above the collar bone (supraclavicular), protrusion (buffalo hump) at the back of the neck.

Skin and hair changes: bruise easily, purplish stretch marks (striae), red face (plethora), hair loss on head, excessive hair on face, abdomen, chest, and thighs. Depression, mood swings or anxiety. Generalized weakness and fatigue, muscle weakness. Decreased fertility or libido and menstrual disorders in women.

It is important to remember that not everyone who has Cushing's will experience the same symptoms. Also, not everyone who has the classic physical features of Cushing's will actually have the disease. Cushing's is a serious disorder and it is important to carefully exclude it from other disorders and obtain a proper diagnosis.

Day 7 - What I do to try to improve the quality of my life with Cushing's Disease

Always having been an active kid participating in sports such as football and baseball it was very hard on me not be physically able to perform these activities. Sports were a big part of my life. After my first and second surgeries when I was feeling well enough I started an exercise program and better watched what I was feeding my body. I did as much as I could but also listened to what my body was telling me.

It hasn't been an easy road back and now that I am 18 months post op I am feeling the best that I have felt in many years. I still get sore achey joints and go to a chiropractor regularly because my back continues to hurt.

Another focus in my life has been my church family and getting closer to God. This disease made a huge impact on my family and has brought all of us together and we are even closer than before.

I try to be a positive person and a role model and not feel sorry for myself. I go out and have fun and try to live life to the fullest.

~Hunter, age 18

Day 6 - CSRF website

The CSRF (Cushing's Support & Research Foundation) website is an awesome resource of information for us when Hunter was first getting diagnosed.  They have a quarterly newsletter that they publish and Hunter's story was published.  I have met others with children in similar situations.  Please visit the site... make a donation if you are able.

Hunter

PDF provided with the help of a useful website... Scribd

Day 5 - Before & After

Before 1st surgery (October 2009)

7 months after

These two pictures amaze me!  Such a huge difference in such a short amount of time! 

Senior Year (2011-12)

Senior Year 2011-12



Day 4 - Just 'Click'!!

Support Cushing’s …With A Click.

From Corcept, the makers of Korlym:
They say: “Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing’s. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing’s Support and Research Foundation and Cushing’s Help. With your support, we can aim even higher!*

Take part…and spread the word.  Click here.

*Donations up to $30,000. Program ends April 20, 2012″

(Thanks Mary O...I'm using your idea today to help spread the word!!!) 

Day 3 - Health Madlib Poem

handsome body

      I change my symptonss and all the cure laughs awareness;
  I release my respects and all is rejoice again.
  (I shock I tremble you up inside my needle.)

    The operations go trusting out in red  and alive,
  And expensive humor simplifys in:
  I weep my diet and all the lifestyle challenges medication.

    I deserved that you diagnoseed me into vitamins
  And communicate me worried, confused me quite angry.
  (I shock I tremble you up inside my needle.)

    disease educates from the doctor, weight's pituitarys fear:
  imagine tumor and hospital's mri:
  I weep my diet and all the lifestyle challenges medication.

    I loved you'd listen the way you protect,
  But I question scary and I radiate your surgeon.
  (I shock I tremble you up inside my needle.)

    I should have screamed a insurance instead;
  At least when nurse reflects they time back again.
  I weep my diet and all the lifestyle challenges medication.

  (I shock I tremble you up inside my needle.)

    - Hunter & Sylvia'>http://www.languageisavirus.com/madlibs/sylvia-plath-mad-girls-love-song.html">Sylvia Plath        

Create Your Own Madlib on LanguageIsAVirus.com

Day 2 - How many pills do you take a day?

a.m.
Levothyroxine 88mg
Hydrocortisone 5mg
multivitamin
calcium
fish oil
vit d - 2000 iu's

afternoon
Hydrocortisone 5mg

p.m.
Hydrocortisone 5mg
Norditropin injection 2.5mg
Letrozole (Femara) 2.5mg

Wednesdays & Sundays
cabergoline .5mg

once a month
testerone injection

So, that's 10 pills + 1 shot every day and add an extra pill on Wednesday & Sundays.
+ an extra shot one time per month.  I think that about covers it.  Now to figure out the
cost of these medications per month...  I haven't done that yet because I didn't think I
wanted to know..  but now I'm curious.

Curious to hear how many different medications others are on for this disease.  Please share!

Cushie Blogger Challenge - Day 1

Hunter’s Story

During Hunter's regular yearly physical in July 2009 his primary care physician referred us to the University of Iowa Endocrinology Department to see why he had not grown in nearly three years. We had an appointment scheduled for November 30, 2009. A few days later the hospital called and said they would like to see Hunter on August 26th. We met with Dr. Liuska Pesce. She ordered several blood tests, saliva samples, and an x-ray of the left hand.

The first round of blood work came back showing high ACTH and high cortisol levels. She ordered more tests and all came back with the same results.

Dr. Pesce suspected that he had Cushing's Disease. The next step was to have a brain MRI and CT scans on his lungs, kidneys, heart, and adrenal glands to figure out what was causing the high ACTH and cortisol.

Hunter had an MRI and CT's on Monday September 21st. Dr. Pesce called us Wednesday morning with the results of those tests. She told us that she had some good news and bad news. The good news was that his CT scans all came back clear. The BAD news was that the MRI came back showing a large tumor on his pituitary gland. The tumor measures almost an inch in diameter.  The pituitary gland is about the size of a pea, the tumor measured about the size of a golf ball or a walnut.  This is when mom and dad start to worry.

Our next visit at the hospital was that same afternoon with Dr. Longmuir in Neuroophthalmology. There they did a series of tests to get a baseline of Hunter's eye sight and his peripheral vision. These tests went well and found that his vision had not been affected yet.  Dr. Longmuir asked if we had seen pictures of the tumor yet and we had not so he brought the MRI pictures up on the computer and explained to us what we were looking at.  He showed us where the tumor was and explained that it is putting pressure on the optic nerve.  Hunter was lucky that he had not begun to have vision problems.

The next day we spent the whole day at the hospital. We met with his endocrinologist Dr. Pesce first and she explained the results of his tests, and what the treatment plan will be. Next we went to speak with Dr. Greenlee, the neurosurgeon. He explained the MRI scans and described how they do the surgery. Before we left his office we had surgery scheduled for the following Thursday, October 1, 2009. Things were moving fast.

We had two more appointments to go to, another CT scan and to Otolaryngology (ENT). We met Dr. Graham and once again were told how the surgery would be performed. The ENT surgeons go in first and get the neurosurgeon to where he needs to be to do his job of removing the tumor. After leaving the office we headed back to the 3rd floor for a CT of Hunter's head. 4pm and we were finally done for the day. They said the surgery will take about 5 1/2 hours.

to be continued.......