Day 11: Drug Therapy for Cushies Finally Available

Today is the day my Cushie friends and I have been waiting for.  Finally, a drug therapy is available to all of us Cushies stuck in a persistent hypercortisolemic state.  Korlym, the first FDA-approved drug in the United States, is available to patients who need it and want it.

I have been watching the release of this drug closely, and I found what I was looking for today.  This Patient Guide for Korlym outlines all the ins and outs of taking this drug.  

Today, I am happy to share the statement that was music to my ears: 

"We are determined that every patient who could benefit from Korlym will receive it," added Steven Lo, Corcept's Vice President of Commercial Operations. 

If you are a Cushing's patient burdened by the high costs of diagnosis -- lab work, doctor visits, travel -- please be sure to check into SPARK (Support Program for Access and Reimbursement for Korlym). I like to see them making good on that promise that the Veep made. :)

-------------

4/10/12 - Corcept Therapeutics Announces National Product Launch of Korlym(TM) for Patients With Endogenous Cushing's Syndrome

MENLO PARK, CA (Marketwire) 04/10/12 Corcept Therapeutics Incorporated (NASDAQ: CORT) announced today that Korlym™ (mifepristone) 300 mg Tablets is available by prescription nationwide. On February 17, 2012, the U.S. Food and Drug Administration (FDA) approved Korlym as a once-daily oral medicine to control hyperglycemia secondary to hypercortisolism in adult patients with endogenous Cushing's syndrome who have type 2 diabetes mellitus or glucose intolerance and have failed surgery or are not candidates for surgery. Korlym is the first FDA-approved treatment for this illness. "After using mifepristone in the company's clinical trial, I am pleased that it will be available for the medical management of my patients with Cushing's syndrome for whom surgery failed," said James W. Findling, M.D., Professor of Medicine, Endocrinology at the Medical College of Wisconsin. "The majority of patients in the trial had very gratifying improvements in the clinical and metabolic manifestations of hypercortisolism." Korlym is a once daily oral medication. The medicine's FDA-approved labeling instructs physicians to titrate each patient's Korlym dose to clinical efficacy by assessing tolerability and degree of improvement in Cushing's syndrome manifestations. In the first six weeks, these manifestations may include changes in glucose control, anti-diabetic medication requirements, insulin levels and psychiatric symptoms. After two months, assessment may also be based on improvements in cushingoid appearance, acne, hirsutism, striae or decreased body weight, along with further changes in glucose control. "Korlym offers a new treatment strategy that has the potential to improve the lives of many patients," said Joseph K. Belanoff, M.D., the company's Chief Executive Officer. "We have worked hard to make it available as quickly as possible." "We are determined that every patient who could benefit from Korlym will receive it," added Steven Lo, Corcept's Vice President of Commercial Operations. "Our specialty pharmacy partner, Curascript, is prepared to dispense medicine. Our Support Program for Access and Reimbursement for Korlym (SPARK) is ready with case managers to help patients navigate their medical insurance coverage and identify the Corcept and charitable foundation support programs available to them." Physicians and patients seeking more information can visit http://www.korlymspark.com or call 1-855-4Korlym. About Cushing's SyndromeEndogenous Cushing's syndrome is a rare and life-threatening endocrine disorder that results from long-term exposure to excess levels of the hormone cortisol. This excess is caused by tumors that usually occur in the pituitary or adrenal glands that over-produce, or prompt the over-production of, cortisol. Although cortisol at normal levels is essential to health, in excess it causes a variety of problems, including glucose intolerance and diabetes, upper body obesity, a rounded face, stretch marks on the skin, an accumulation of fat on the back, thin and easily bruised skin, muscle weakness, bone weakness, persistent infections, high blood pressure, fatigue, irritability, anxiety, psychosis and depression. Women may have menstrual irregularities and facial hair growth, while men may have decreased fertility or erectile dysfunction. More than 70 percent of Cushing's syndrome patients suffer from glucose intolerance or diabetes. If left untreated, Cushing's syndrome has a five-year mortality rate of 50 percent. About Korlym™ (mifepristone) 300 mg TabletsKorlym is a once-daily oral medication that blocks the glucocorticoid receptor type II (GR-II) to which cortisol normally binds. By blocking this receptor, Korlym inhibits the effects of excess cortisol in Cushing's syndrome patients. The FDA-approved labeling instructs physicians to titrate each patient's Korlym dose to clinical efficacy by assessing tolerability and degree of improvement in Cushing's syndrome manifestations. The FDA has designated Korlym as an Orphan Drug, a special status designed to encourage the development of medicines for rare diseases and conditions. Because Korlym is an Orphan Drug, Corcept will have marketing exclusivity for the FDA-approved indication until February 2019. IMPORTANT SAFETY INFORMATION WARNING: TERMINATION OF PREGNANCY See full prescribing information for complete boxed warning. Mifepristone has potent antiprogestational effects and will result in the termination of pregnancy. Pregnancy must therefore be excluded before the initiation of treatment with Korlym, or if treatment is interrupted for more than 14 days in females of reproductive potential. Contraindications Pregnancy Use of simvastatin or lovastatin and CYP 3A substrates with narrow therapeutic range Concurrent long-term corticosteroid use Women with history of unexplained vaginal bleeding Women with endometrial hyperplasia with atypia or endometrial carcinoma Warnings and Precautions Adrenal insufficiency: Patients should be closely monitored for signs and symptoms of adrenal insufficiency. Hypokalemia: Hypokalemia should be corrected prior to treatment and monitored for during treatment. Vaginal bleeding and endometrial changes: Women may experience endometrial thickening or unexpected vaginal bleeding. Use with caution if patient also has a hemorrhagic disorder or is on anti-coagulant therapy. QT interval prolongation: Avoid use with QT interval-prolonging drugs or in patients with potassium channel variants resulting in a long QT interval. Use of Strong CYP3A Inhibitors: Concomitant use can increase mifepristone plasma levels significantly. Use only when necessary and limit mifepristone dose to 300 mg. Adverse ReactionsMost common adverse reactions in Cushing's syndrome ( ≥ 20%): nausea, fatigue, headache, decreased blood potassium, arthralgia, vomiting, peripheral edema, hypertension, dizziness, decreased appetite, endometrial hypertrophy. To report suspected adverse reactions, contact Corcept Therapeutics at 1-855-844-3270 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. Drug Interactions Drugs metabolized by CYP3A: Administer drugs that are metabolized by CYP3A at the lowest dose when used with Korlym. CYP3A inhibitors: Caution should be used when Korlym is used with strong CYP3A inhibitors. Limit mifepristone dose to 300 mg per day when used with strong CYP3A inhibitors. CYP3A inducers: Do not use Korlym with CYP3A inducers. Drugs metabolized by CYP2C8/2C9: Use the lowest dose of CYP2C8/2C9 substrates when used with Korlym. Drugs metabolized by CYP2B6: Use of Korlym should be done with caution with bupropion and efavirenz. Hormonal contraceptives: Do not use with Korlym. Use in Specific Populations Nursing mothers: Discontinue drug or discontinue nursing. Please see the accompanying full Prescribing Information including boxed warning atwww.corcept.com/prescribinginfo.pdf Please see the accompanying Medication Guide at www.corcept.com/medicationguide.pdf About Corcept Therapeutics IncorporatedCorcept is a pharmaceutical company engaged in the discovery, development and commercialization of drugs for the treatment of severe metabolic and psychiatric disorders. Korlym, a first generation GR-II antagonist, is the company's first FDA-approved medication. The company has a portfolio of new selective GR-II antagonists that block the effects of cortisol but not progesterone. Corcept owns an extensive intellectual property portfolio covering the use of GR-II antagonists, including mifepristone, in the treatment of a wide variety of psychiatric and metabolic disorders. The company also holds composition of matter patents for its selective GR-II antagonists. Statements made in this news release, other than statements of historical fact, are forward-looking statements. Forward-looking statements are subject to a number of known and unknown risks and uncertainties that might cause actual results to differ materially from those expressed or implied by such statements. For example, there can be no assurances that clinical results will be predictive of real-world use, or regarding the pace of Korlym's acceptance by physicians and patients, the reimbursement decisions of government or private insurance payers, the effects of rapid technological change and competition, the protections afforded by Korlym's Orphan Drug Designation or by Corcept's other intellectual property rights, and the cost, pace and success of Corcept's other product development efforts. These and other risks are set forth in the Company's SEC filings, all of which are available from our website (http://www.corcept.com) or from the SEC's website (www.sec.gov). We disclaim any intention or duty to update any forward-looking statement made in this news release. Investor Contact: Charles Robb Chief Financial Officer Corcept Therapeutics Incorporated 650-688-8783 Media Contact: Alyson Kuritz Communications Strategies, Inc. 973-635-6669 Source: Corcept Therapeutics

Day 10: New Report Outlines Korlym's Success for Cushies

Data Published in Premiere Endocrinology Journal Shows Korlym Provides Significant Clinical Improvement in Patients with Endogenous Cushing's Syndrome

Press Release: Corcept Therapeutics – Mon, Apr 9, 2012 12:45 PM EDT

Companies: Corcept Therapeutics Incorporated

MENLO PARK, CA--(Marketwire -04/09/12)- Corcept Therapeutics Incorporated (NASDAQ: CORT - News), a pharamceutical company engaged in the discovery, development and commercialization of drugs for the treatment of severe metabolic and psychiatric diorders, today announced the results of its phase 3 SEISMIC trial published in The Journal of Clinical Endocrinology and Metabolism (JCEM) demonstrated that refractory Cushing's syndrome patients receiving Korlym (mifepristone) experienced significant clinical improvement.

The U.S. Food and Drug Administration (FDA) recently approved Korlym as a once-daily oral medicine to control hyperglycemia secondary to hypercortisolism in adult patients with endogenous Cushing's syndrome who have type 2 diabetes mellitus or glucose intolerance and have failed surgery or are not candidates for surgery. Korlym is the first FDA-approved therapy for endogenous Cushing's syndrome.

"The recently published SEISMIC study showed that Korlym significantly improved diabetes control (blood glucose levels, insulin sensitivity and Hemoglobin A1C), promoted weight loss and decreases in waist circumference, and improved body composition, mood and cognition in patients with Cushing's syndrome," said Maria Fleseriu, M.D., F.A.C.E., Director Northwest Pituitary Center, Oregon Health & Science University, Associate Professor of Medicine & Neurological Surgery, a principal investigator in the study. "Although clinically significant adrenal insufficiency is a potential side effect of glucocorticoid receptor antagonism, it was uncommon during this study."

"Glucocorticoid receptor antagonism with Korlym offers a new and exciting approach to control the clinical manifestations of this severe, debilitating disease," Dr. Fleseriu added. "The side effect profile over 6 months is well characterized and manageable with close follow-up."

Physicians and patients seeking more information can visit http://www.korlymspark.com.

The Commercialization of Korlym
Corcept's guiding principle is that every patient who is prescribed Korlym will receive it." [blogger emphasis]  Our mission is to get medicine to patients who need it," said Joseph K. Belanoff, M.D., the company's Chief Executive Officer. "Corcept's Support Program for Access and Reimbursement for Korlym (SPARK) will provide patients with a case manager who can help them navigate their medical coverage on a case by case basis and identify the Corcept support programs available to them."

The SEISMIC StudyFifty Cushing's syndrome patients were enrolled in the study. Forty-three had Cushing's disease (an ACTH-producing tumor of the pituitary gland), of which 42 had prior surgery, four patients had ectopic ACTH-producing tumors and three had adrenal cancer. Of the 29 patients enrolled in the study who were glucose intolerant, 60% (p < 0.0001) met the study's primary endpoint, defined as a 25% or greater reduction in blood sugar level on a standard oral glucose tolerance test from baseline to 24 weeks. In these patients there was a continued improvement in glucose tolerance measured at each of the evaluations at week 6, 10, and 16, as well as at week 24. Of the 12 patients taking insulin at baseline, seven cut their daily dose by at least 50%. There was also a statistically significant reduction in mean HbA1c over the course of the study, from 7.43% at baseline to 6.29% at study conclusion (p < 0.001). Of the twelve patients who had an HbA1c over 7% at baseline (mean = 8.5%), nine achieved an HbA1c below 7%, including six who achieved an HbA1c of 6% or below.

All patients were evaluated on the key secondary endpoint of "global clinical improvement" as determined by an independent data review board's evaluation of eight clinical areas -- glucose, blood pressure, lipids, weight and body composition, appearance, strength, bone, psychiatric and quality of life measures. Eighty-seven percent of the patients (p < 0.0001) were judged to have made significant clinical improvement by the data review board.

The study examined patients' weight gain/loss during the 24-week trial, with over half of study participants experiencing weight loss of at least 5%, compared to baseline (p < 0.001). Patients demonstrated a mean reduction in waist circumference compared to baseline -- 6.8 cm in women and 8.4 cm for men (p < 0.001 for each gender). [That's 2.7 inches in women and 3.3 inches in men.  This really is significant. High cortisol will prevent your body from losing weight, no matter your exercise or diet regimen.  To me, this really means that the medication stops the body from recognizing there is cortisol swirling around up in there. That's good news for a Cushie.]

Side-effects observed in the phase 3 study were consistent with the safety profile of Korlym's active ingredient, mifepristone. The majority of adverse events were considered to be mild or moderate, with fatigue and nausea being the ones most commonly reported.

Approximately 90% of the patients who completed the study chose to continue as part of Corcept's extension study. [patients seem to be happy with the drug therapy]

About Cushing's SyndromeEndogenous Cushing's syndrome is a rare and life-threatening endocrine disorder that results from long-term exposure to excess levels of the hormone cortisol. This excess is caused by tumors that usually occur in the pituitary or adrenal glands that over-produce, or prompt the over-production of, cortisol. Although cortisol at normal levels is essential to health, in excess it causes a variety of problems, including glucose intolerance and diabetes, upper body obesity, a rounded face, stretch marks on the skin, an accumulation of fat on the back, thin and easily bruised skin, muscle weakness, bone weakness, persistent infections, high blood pressure, fatigue, irritability, anxiety, psychosis and depression. Women may have menstrual irregularities and facial hair growth, while men may have decreased fertility or erectile dysfunction. More than 70 percent of Cushing's syndrome patients suffer from glucose intolerance or diabetes.

If left untreated, Cushing's syndrome has a five-year mortality rate of 50 percent. [WOW. I have never seen this statistic. So sad.]

About Korlym™ (mifepristone) 300 mg TabletsKorlym is a once-daily oral medication that blocks the glucocorticoid receptor type II (GR-II) to which cortisol normally binds. By blocking this receptor, Korlym inhibits the effects of excess cortisol in Cushing's syndrome patients.

The FDA-approved labeling instructs physicians to titrate each patient's Korlym dose to clinical efficacy by assessing tolerability and degree of improvement in Cushing's syndrome manifestations. In the first six weeks, these manifestations may include changes in glucose control, anti-diabetic medication requirements, insulin levels and psychiatric symptoms. After two months, assessment may also be based on improvements in cushingoid appearance, acne, hirsutism, striae or decreased body weight, along with further changes in glucose control.

The FDA has designated Korlym as an Orphan Drug, a special status designed to encourage the development of medicines for rare diseases and conditions. Because Korlym is an Orphan Drug, Corcept will have marketing exclusivity for the FDA-approved indication until February 2019.

IMPORTANT SAFETY INFORMATION

 
----------------------------------------------------------------------------
 WARNING: TERMINATION OF PREGNANCY

 See full prescribing information for complete boxed warning.

 Mifepristone has potent antiprogestational effects and will result in the
 termination of pregnancy. Pregnancy must therefore be excluded before the
 initiation of treatment with Korlym, or if treatment is interrupted for
 more than 14 days in females of reproductive potential.
----------------------------------------------------------------------------

Contraindications

• Pregnancy
• Use of simvastatin or lovastatin and CYP 3A substrates with narrow therapeutic range
• Concurrent long-term corticosteroid use
• Women with history of unexplained vaginal bleeding
• Women with endometrial hyperplasia with atypia or endometrial carcinoma

Warnings and Precautions

• Adrenal insufficiency: Patients should be closely monitored for signs and symptoms of adrenal insufficiency.
• Hypokalemia: Hypokalemia should be corrected prior to treatment and monitored for during treatment.
• Vaginal bleeding and endometrial changes: Women may experience endometrial thickening or unexpected vaginal bleeding. Use with caution if patient also has a hemorrhagic disorder or is on anti-coagulant therapy.
• QT interval prolongation: Avoid use with QT interval-prolonging drugs or in patients with potassium channel variants resulting in a long QT interval.
• Use of Strong CYP3A Inhibitors: Concomitant use can increase mifepristone plasma levels significantly. Use only when necessary and limit mifepristone dose to 300 mg.

Adverse ReactionsMost common adverse reactions in Cushing's syndrome ( ≥ 20%): nausea, fatigue, headache, decreased blood potassium, arthralgia, vomiting, peripheral edema, hypertension, dizziness, decreased appetite, endometrial hypertrophy.

To report suspected adverse reactions, contact Corcept Therapeutics at 1-855-844-3270 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Drug Interactions

• Drugs metabolized by CYP3A: Administer drugs that are metabolized by CYP3A at the lowest dose when used with Korlym.
• CYP3A inhibitors: Caution should be used when Korlym is used with strong CYP3A inhibitors. Limit mifepristone dose to 300 mg per day when used with strong CYP3A inhibitors.
• CYP3A inducers: Do not use Korlym with CYP3A inducers.
• Drugs metabolized by CYP2C8/2C9: Use the lowest dose of CYP2C8/2C9 substrates when used with Korlym.
• Drugs metabolized by CYP2B6: Use of Korlym should be done with caution with bupropion and efavirenz.
• Hormonal contraceptives: Do not use with Korlym.

Use in Specific Populations

• Nursing mothers: Discontinue drug or discontinue nursing.

Please see the accompanying full Prescribing Information including boxed warning atwww.corcept.com/prescribinginfo.pdf

Please see the accompanying Medication Guide atwww.corcept.com/medicationguide.pdf

About Corcept Therapeutics IncorporatedCorcept is a pharmaceutical company engaged in the discovery, development and commercialization of drugs for the treatment of severe metabolic and psychiatric disorders. Korlym, a first generation GR-II antagonist, is the company's first FDA-approved medication. The company has a portfolio of new selective GR-II antagonists that block the effects of cortisol but not progesterone. Corcept owns an extensive intellectual property portfolio covering the use of GR-II antagonists, including mifepristone, in the treatment of a wide variety of psychiatric and metabolic disorders. The company also holds composition of matter patents for its selective GR-II antagonists.

Cushing's Patient Assistance Program

WASHINGTON, April 6, 2012

In partnership with Corcept Therapeutics Inc., the National Organization for Rare Disorders (NORD) has established a Cushing's Syndrome Patient Assistance Program for patients with endogenous Cushing's syndrome who need financial assistance with certain costs related to their medical diagnosis and/or care.

Endogenous Cushing's syndrome is a serious and debilitating rare disorder caused by over-production of cortisol, a steroid hormone that increases blood sugar levels, by the adrenal glands.  The syndrome most commonly affects adults between the ages of 25 and 40.

"It is especially appropriate that we are making this announcement just before Cushing's Awareness Day, which will be observed on Sunday," noted NORD President and CEO Peter L. Saltonstall.  "The Cushing's Support and Research Foundation (CSRF), a non-profit organization for patients and families affected by Cushing's syndrome, is a member of NORD.  We are pleased to join CSRF and the entire Cushing's community in promoting awareness of Cushing's syndrome at this time." 

The new program, which launches on April 11, will provide assistance with deductible and/or co-pay expenses to ensure patient access to Korlym™, a drug developed by Corcept and approved by the Food and Drug Administration earlier this year.  

The program will also provide financial assistance to eligible uninsured and underinsured patients for reasonable expenses required for diagnosis, direct treatment, and care that are not covered by insurance.  These would include incidental medical expenses such as lab and diagnostic tests, as well as related expenses such as travel for a medical consultation.

Patients seeking information about the program, or to apply, may contact NORD through a toll free phone number (800 999-6673 Ext. 326) or by email (cushings@rarediseases.org).

Prior to FDA's approval of Korlym™ on Feb. 17, 2012, there were no approved medical therapies for the treatment of endogenous Cushing's syndrome.  Korlym™ is approved for use in patients with endogenous Cushing's syndrome who have type 2 diabetes or glucose intolerance and are not candidates for surgery or have not responded to prior surgery.

NORD is a nonprofit organization, established in 1983, that represents the 30 million Americans with rare diseases.  In addition to patient assistance programs, NORD provides programs of advocacy, education, awareness, and research.

SOURCE National Organization for Rare Disorder (NORD)

http://www.sacbee.com/2012/04/06/4396105/nord-announces-new-cushings-syndrome.html

Day 9 of Cushing's Awareness Challenge: What to Expect

I have been really struggling mentally and physically with this blogging challenge. The stress has been overwhelming. I just can't manage to pull it all together.
Today, I had help to clean my house (hi Lil), and I cleaned for a portion of the day, too. We started at 8 am. After two hours, I took pain meds. After 6 hours, I was relegated to the couch. By 5 pm, I made a walk-in appointment with my chiropractor. My back had seized up, pulling at my neck and shoulders, with arthritis pain in my ankles and wrists. Yes, today, I had done too much. I fell asleep in bed by 8:30 pm.
So yet again, tonight I write this brief blog on my iPhone in my bed, wishing I had planned ahead for these blog entries yet thankful for the relief of lying instead of sitting.

Day 8: Happy Birthday Harvey

"Harvey Cushing, M.D."

Dr. Harvey Cushing is known as the "father of neurosurgery," given credit for laying the foundation upon which the whole field of brain surgery is built. At the time he began to concentrate on improving the results of brain surgery in the early 20th century, such surgery was nearly 100 percent fatal. As a result of removing a tumor from Gen. Leonard Wood, his study of the pituitary gland led to identification of what is known as Cushing's syndrome. Cushing's Law states that an increase in intracranial tension causes an increase in blood pressure. The blood pressure remains higher, however, than the intracranial pressure, thus preventing the brain from being shut off from its blood supply. His work by 1932 led to a reduction of the mortality rate in brain surgery to 10 percent.

Click to buy a stamp of our favorite neurosurgeon.

Day 7: Out & Living a Little

I have shared as many things as I could think to here on this blog.  However, I believe I forgot one of the most important lessons of all.

If you feel Cushing's grant you a reprieve, go out and live your life.  

You may have a few good hours. 

You may be lucky to get a few good days.

Whatever it is, don't waste it.

Be sure to grab it with both fists, and don't turn loose of it.

~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * 

To that end, I plan to spend the rest of easter weekend out with my daughter / favorite miracle bunny.

Happy Easter, y'all.

Day 6: A Good Friday

Today, I took my daughter to her first Easter egg hunt. She is 3.5 years old.

Wait. What?  Is that right? How can this be?

Year 1: no walking, no hunt 

Year 2: hunted eggs in a park, Mama supplied eggs, thus no competition
Year 3: surgery at cancer center to remove pesky tumor from Mama's pituitary for the second time.

Oh yes yes yes. Now I remember. OK. OK. So that's how we got here. That's how my daughter is 3.5 years old and never engaged in a proper Easter egg hunt.

In 2011, I returned home from my four-day hospital stay on Saturday. Easter was the next day. I had not made that Right-Turn-Clyde onto Recovery Road yet. I had been so sick in the hospital with normal post-op cortisol-finally-dropping misery coupled with diabetes insipidus. To survive, I was adamant about wanting the room silent and dark. The slightest sound overwhelmed my body. A beam of light was too intrusive for me to process. When I returned home, I tried to protect myself by replicating that environment, except with hopes of real control over ingress and egress. Thankfully, no one obsessed over my vitals at home. With no sound, no light, I found sleep, but then, the tinnitus set in. Don't know what that nifty symptom is?  Be thankful. It's the omnipresent ringing in the ears. Nearly one year later, I still hear it. I hear it right now as I type in my new state of silence. Grasshopper-rubbing-legs-together silence. Great. 

What's that? An Easter egg hunt? Oh yes. 

So, I tried to plan ahead and all (always the best intentions without all that feel-good execution).  I had purchased the Easter egg decorating stuff before I went into the hospital. After the surgery, I just didn't feel up to it. My daughter stayed with my parents while I was in the hospital, and she remained with them that Saturday night so I could sleep.

I remember my mama calling me Sunday morning about Easter plans at my sister's.

No, I don't think I can go. 

Say what?

You want to take my child over there and let her hunt eggs with her young cousin, without me to see her or share in her joy? 

No. Yes, sure, you can take her. 

She will have fun. 

No, no, I don't want her to miss Easter just because of me. 

No, I'm sure. 

I'll be fine. 

Just bring her home to me after all y'all finish up.

OK. Bye.

I buried my head into my husband's chest as I sobbed.

Looking for reassurance I knew no one could give, I asked, Next year will be different, right?  All my lovey could do is nod.

* ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~

I took my daughter to her first Easter Egg hunt today.  She had so much fun with the other kids, finding treats inside the eggs, and really marveling in the glory of it all.  I feel pretty confident in saying that it made both of us very happy. I thank all the new friends I've made in California for hosting such a fun Easter celebration. It means more to me than I could ever tell you.  I can only hope my little one will always be as delighted and delightful as she was today.

Today is a good Friday because I didn't think about Cushing's too much. That's really a good Anyday. I'll take this any day of the week and any day of the year. 

So go ahead. Ask someone with Cushing's how this disease has altered the trajectory of their lives and those of their family. I bet they will answer with a thousand stories of unfulfilled promises. What I know for sure is that as long as I am alive, I will try to make up for all the times I couldn't do like I had planned or promised. I just hope this body lets me.

Day 5: Today is Your Day

Last summer, still recovering from my April 20, 2011 surgery, I start watching the Why Not with Shania Twain series on the Oprah Winfrey Network.

As a Texan and in-my-blood country music lover, I had always enjoyed Shania's music.  Seriously, who wasn't glued to their television sets when they first saw her videos "Dance with the One that Brought You" and "Whose Bed Have Your Boots Been Under?"

I admit to only knowing a little about her personal life (I blame studying in college). I knew that her parents died when she was just out of high school, and she took charge singing to earn a living to support her younger orphaned siblings.  She had it rough, worked very hard and succeeded. That always inspired me.
Plus, she wore mid drift shirts in her videos and that shocked Nashville. Apparently, that had never been done in country music. That always made me laugh.

Well, the Why Not with Shania Twain followed Shania's breakdown and recovery after finding out her husband/ producer was having an affair with her best friend.  She, understandably, was devastated.  She lost her voice and had to find the courage to be herself again.

Here is a clip about the show in her own words:

Why Not? with Shania Twain is the intimate portrait of country/pop music sensation Shania Twain on her emotional journey from heartbreak back to the top. This highly anticipated OWN original series is filled with revelation and unexpected adventure. Follow Shania as she heals, shares and rediscovers her voice.

During the show, Shania visited with others who had experienced immense loss. She listened and they talked about grief and grieving for the life you once had but lost.  Throughout the trip, Shania worked through the melodies and lyrics on her song, Today is Your Day. The song truly unfolds in front of our eyes.

Initially, a listener may only dismiss this song as one dripping in positivity.  To a viewer of the show, it means much more. It was a Song of Self-Soothing. She was singing it until it stuck, singing it until her words rang true for her life, singing it until that song's shoe fit.  I understood it instantly, and it quickly became a favorite of mine.

As I putter around in the waiting room or the patient room at a doctor's visit, I somehow manage to think of her.  I open up iTunes, and I play this song. It soothes me instantly. Humming it in my mind while dealing with yet another medical professional is just the right medicine.  It keeps me calm and focused, alert and content.  It is the perfect mix of "This-totally-applies-to-me-as-a-sick-person" and "See-everyone-struggles-with-something" that makes me feel like I can fight my way out, too... AND WIN.  After all this time struggling to do it other ways, I am happy to have found peace some where. While she wrote it to rebuild her courage to sing, Shania's song is a gift to me.

I plan to see Shania as she opens a long engagement singing at Caesars Palace, starting December 2012. I really look forward to being well enough to do that.

Thank you, Shania Twain. I wish you all the happiness.

xxoo Melissa

P.S. You can download the song Today is your Day on iTunes here.

Today is your Day
You got what it takes you can win…You got what it takes you can winToday is your day to begin.Don't give up here, don't you quit.The moment is now, this is itKnow that you can then you willGet to the top of the hillPart of the fun is the climbYou just gotta make up your mind
That today is your dayAnd nothing can stand in your wayToday is your dayEverything's goin' your wayToday (you can do it)Today (c'mon c'mon)Today (c'mon do it)Today
When somebody throws sticks and stonesAll they can break are your bonesAnd life's gonna kick you aroundThen kick you again when you're down
But today is your dayAnd nothing can stand in your wayToday is your dayEverything's goin' your wayToday (c'mon do it now)TodayTodayToday
mmmm life's gonna kick you, its gonna kick you around, its gonna kick you down
Brush yourself off no regretsThis is as good as it getsDon't expect more or lessJust go out and give it your best (give it your best)
Today is your dayAnd nothing can stand in your wayToday is your dayEverything's goin' your way.

Day 4: Not Tonight, I Have a Headache

 

When I was wondering if I could blog every day, I worried about days like this.  

"Mama told me there'd be days like this."

And this blog post almost didn't happen.

-@-@-@-@-@-@-

I woke up today with my back and neck out of whack.  I called a new chiropractor and asked if I could come right over. Points for her, she said yes.

Nice chiropractor asked, "So what brings you in today?"

I replied, "My back -- upper and lower -- are locked up. I have a headache. It feels like a sword is stabbing me, from this fleshy left side of my neck to this lower left quadrant of the back of my skull. Then, it feels like the tip is coming out of this northwest quadrant up here at the front ... and then the sword u-turns to finish the job and stabs me straight down into my left shoulder.  It bypassed my heart today out of pity." 

I looked up after stretching and distorting my body for effect. Greeted by blank stare.

Undeterred, she ventured on, detailing her treatment protocols and what might help. She was able to make spinal adjustments to unlock things to get my back moving again -- goodbye slab of concrete -- but my headache has remained. My body is aching.

I did try to find a fun headache photo, but 99% were of people holding the foreheads or temples in pain. Nope, not accurate for me. My pain shoots upwards along the neck muscles into the occipital bone, which forms the base of the skull. Mine feels like there is so much upwards pressure on this bone that I want to pull my own head off and throw it across the room. 

So this is me with Cushing's, swords and all.

-@-@-@-@-@-@-

The root of my headaches seem to be muscle contractions.

See where those lines come together behind his ear? That's the sword's entry point.

This is how I feel. Wish I could pull it together for a better blog post, but hey folks, this is Cushing's.  Have fun with it: Say it like James Earl Jones says "This is CNN."

Day 3 of Cushing's Awareness Challenge: Cushing's Patient Groups Get Fundraising Boost

I'm happy to report today's news from Corcept Therapeutics, the manufacturer of Korlym. This medication is the first FDA approved medication for the treatment of persistent Cushing's in the United States.

Corcept has shown great respect for the Cushing's community, including patient groups, bloggers, and yes, even Cushing's with Moxie.  They are responsive to ideas and feedback.  I am so happy to have a caring company on our side.  I was ecstatic to get the phone call about their project for Cushing's Awareness Day.

Support Cushing's ...with a Click.

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.

When:    now through April 20, 2012 

What:     Corcept Therapeutics will donate $5 for every click

Where:   http://cushingsawareness.korlym.com/  

For:       two Cushing's patient advocacy groups, Cushings-Help.com and Cushing’s Support and Research Foundation, will share all money raised. Corcept has promised a minimum of $15,000. 

Please be sure to share the link, and ask your friends and family to click, too.  

* ~ * ~ * ~ * ~ * ~ * ~ *

For more information on Korlym, visit these websites to see full safety and prescribing information, including boxed warning.

DISCLAIMER:  I participated in Corcept's market research study in February 2012. Corcept Therapeutics paid for my travel expenses. I flew to Philadelphia, where I gave feedback on marketing material and told my story on camera.  For that, I was received monetary compensation of $250. In addition, I am a Corcept stockholder.