Adult growth hormone deficiency – benefits, side effects, and risks of growth hormone replacement

Frontiers in Endocrinology, 04/24/2013  

Reed ML et al. – Deficiency of growth hormone (GH) in adults results in a syndrome characterized by decreased muscle mass and exercise capacity, increased visceral fat, impaired quality of life, unfavorable alterations in lipid profile and markers of cardiovascular risk, decrease in bone mass and integrity and increased mortality.

The potential of GH to act as a mitogen has resulted in concern over the possibility of increased de novo tumors or recurrence of pre–existing malignancies in individuals treated with GH.

Though studies of adults who received GHRT in childhood have produced conflicting reports in this regard, long term surveillance of adult GHRT has not demonstrated increased cancer risk or mortality.


Read more: http://www.mdlinx.com/endocrinology/news-article.cfm/4588746/growth-hormone-adult-growth-hormone-deficiency#ixzz2RODfAgDb

Cushing’s Syndrome, Prostate Cancer and Adrenocortical Carcinoma

Orphagen has identified and characterized small molecule antagonists to steroidogenic factor-1 (SF-1). SF-1 binds to and regulates DNA promoter elements in the major transporters and enzymes required for adrenal steroid synthesis. It is also required for development of the adrenal gland. SF-1 antagonists inhibit cortisol secretion in adrenal cells and have potential application in two orphan indications, Cushing’s syndrome and adrenocortical carcinoma. In addition, SF-1 appears to have an important role in the progression of advanced prostate cancer.

 

  Cushing’s syndrome: An estimated 20,000 people in the US have Cushing’s, with more than 3,000 new cases diagnosed each year. The incidence is similar in Europe. Cushing’s syndrome disproportionately affects females, who make up about 75% of the diagnosed cases. Symptoms of Cushing’s syndrome can include obesity, diabetes, psychiatric disorders, osteoporosis and immune suppression. Cushing’s syndrome is caused by elevated secretion of cortisol from the adrenal gland, in association with pituitary, adrenal or other cancers. Orphagen has identified small molecule antagonists to SF-1 that have the potential to suppress cortisol levels in all Cushing’s patients without serious side effects.

  Adrenocortical carcinoma (ACC): ACC is a rare malignancy with an extremely poor prognosis (5-year overall survival: 37-47%). Complete surgical resection offers hope for long-term survival but surgery is not an option in up to two-thirds of patients because metastasis has usually occurred by the time of diagnosis. SF-1 is recognized as a potential mechanism-based therapeutic target for control of ACC and an SF-1 antagonist could be used in the treatment of ACC.

  Pediatric ACC: Pediatric ACC is a very rare but aggressive cancer with a long-term survival rate of about 50%. Approximately 60% of children with adrenocortical tumors are diagnosed before the age of four. The SF-1 gene is amplified and SF-1 protein is overexpressed in the vast majority of childhood adrenocortical tumors strongly implicating SF-1 in pediatric adrenocortical tumorigenesis.

  Castration resistant prostate cancer (CRPC): CRPC is the most common cancer in males. Surgery is not an option if the cancer has spread beyond the prostate gland, at which point patients typically receive hormonal therapy, essentially chemical castration. This course of therapy usually fails within two years, resulting in castration resistant prostate cancer (CRPC). Most patients eventually succumb to CRPC, which is the second leading cause of cancer deaths in men. SF-1 antagonists may: (1) block the adrenal androgens that circumvent chemical castration, and are a primary cause of CRPC; and (2) inhibit synthesis of androgens within the prostate tumor itself, where SF-1 may control induction of enzymes for de novo androgen synthesis in treatment-resistant cancers. From http://www.orphagen.com/research_cushings.html

Day Twenty, Cushing's Awareness Challenge

This is one of the suggestions from the Cushing's Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy.  I've said it a thousand times - you know your own body better than any doctor will.  Most doctors have never seen a Cushing's patient, few ever will in the future.

If you believe you have Cushing's (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.

This is your life, your one and only shot (no pun intended!) at it.  Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online  and found a medical treatment that even his own doctors didn't know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

 

Day Fourteen, Cushing's Awareness Challenge

And today, we talk about pink jeeps and ziplines...

How in the world did we get here in a Cushing's Challenge?  I'm sliding these in because in Day Twelve I linked (possibly!) my growth hormone use as a cause of my cancer - and I took the GH due to Cushing's issues.  Clear?  LOL

 

I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006.  I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006.  My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.

 

I got out of the hospital on the day that they left for the cruise and realized that I wouldn't have been much (ANY!) fun and I wouldn't have had any.

An especially amusing thread from that cruise is The Adventures of Penelopee Cruise.  Someone had brought a UFC jug and  decorated her and had her pose around the ship.  The beginning text reads:

Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that's another story!

Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn't have enough spoons to do too much every day.

On the first day, she went sunning on the Libido deck......she didn't last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?

Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August, 2006.  I convinced everyone that I was well enough to go off-road in a pink jeep,  DH wanted to report me to my surgeon but I survived without to much pain and posed for the header image.

In 2009, I figured I have “extra years” since I survived the cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldn’t go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda.

Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.

We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldn’t get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn't. They also didn’t have cave pictures or T-Shirts. What a missed opportunity!

This was so cool, so much fun. I thought I might be afraid at first but I wasn’t. I just followed instructions and went.

Sometimes they told us to break. We did that with the right hand, which was always on the upper cable.

After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldn’t figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.

After that, no more problems with breaking!

The next platform was very high – over 70 feet in the air – and the climb up was difficult. It was very hot and the rocks were very uneven. I don’t know that I would have gotten to the next platform if Michael hadn’t cheered me on all the way.

We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.

But, I did it! No fear, just fun.

Enough of adventures - fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!

 

Day Seven, Cushing's Awareness Challenge

Sleep.  Naps.  Fatigue.  I still have them all.  I wrote on my bio in 1987 after my pituitary surgery "I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep."

That seems to be changing back, at least on the weekends.  Last weekend, both days, I took 7-hour naps each day and I woke up tired. That's awfully close to taking a whole day off to sleep again.

In 2006, I flew to Chicago, IL for a Cushing's weekend in Rockford.  Someone else drove us to Lake Geneva, Wisconsin for the day.  Too much travel, too Cushie, whatever, I was too tired to stay awake.  I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead.

This sleeping thing really impacts my life.  Between choir rehearsals, I come home for a 45-minute nap.  Sometimes, during adult choir rehearsals, I start to nod off anyway.

I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.

Maybe now that I'm more than 5 years out from my kidney cancer I can go back on Growth Hormone again.  My surgeon says he "thinks" it's ok.  I'm sort of afraid to ask my endo about it, though.  I want to feel better and get the benefits of the GH again but I dont want any type of cancer again and I certainly can't afford to lose another kidney.

I'm feeling so old and weary today...

 

Dave deBronkart: Meet e-Patient Dave

Dave deBronkart
Dave deBronkart wants to help patients help themselves -- by owning their medical data, connecting to fellow patients and making medical care better.

When Dave deBronkart learned he had a rare and terminal cancer (MaryO'Note: kidney cancer), he turned to a group of fellow patients online -- and found the medical treatment that saved his life. Now he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

 

Wow! I'm luckier than I thought...

A snippet from Pfizer Files With The FDA For Review Of Axitinib For Patients With Advanced Renal Cell Carcinoma

Each year, approximately 210,000 people worldwide are diagnosed with kidney cancer and nearly 102,000 people are expected to die from the disease. Within the last five years, great advances have been made in the treatment of patients with advanced RCC, the most prevalent form of kidney cancer. However, five-year survival rates for patients with advanced RCC remain low, at around 20 percent.

I've been NED for just over 5 years now...

I'm so glad that there are drugs coming out for kidney cancer now.  When I had my surgery, my surgeon patted me on the hand and said not to worry, that I'd just have the surgery but no chemo.  What he DIDN"T tell me was that, at that time, there was NO chemo that would knock this beast out.

I'm glad he didn't tell me the whole story then.  I was panicked enough.  But Im sure glad that people are working on new treatments, just in case.

Now, if they could get started on something better for Cushing's, too...

Thinking about Kidney Cancer again...

This month is Kidney Cancer Awareness month so yesterday, for St. Patrick's day, I wore one of my kidney cancer awareness shirts with the image above.

I've been thinking a bit about my cancer lately because it seems to be tied up with Sue's death, at least in my mind. Five years ago this month she died from lung cancer. Five years ago next month, I found out I had kidney cancer.

I need to make an appointment with my endo (Dr. Salvatori). Since it will be 5 years, he says I can go back on growth hormone but I'll have to weigh that very carefully.

Did the GH help/contribute to my cancer in the first place? Did it even help me with my post-Cushing's issues? Would my kidney cancer surgeon even agree to let me take GH again? it might harm my remaining kidney.

When my kidney was removed, my left adrenal was, too, causing problems for my post-op Cushing's issues. Today, this news item came up in my Google Alerts - so I joined the http://urotoday.com website to read the whole article.

Routine adrenalectomy is unnecessary during surgery for large and/or upper...
UroToday
We evaluated the radiographic and pathological incidence of adrenal involvement in patients undergoing renal surgery for renal cell carcinoma 7 cm or greater. Patients who underwent renal surgery for tumors 7 cm or greater between 1999 and 2008 were...

I sure wish that they had known that back "in my day" and I still had that adrenal gland.

A day late for this signature but I'll use it anyway since the color works :)

Bilateral adrenocortical carcinoma in a patient with multiple endocrine neoplasia type 1 (MEN1) and a novel mutation in the MEN1 gene

The incidence of adrenal involvement in MEN1 syndrome has been reported between 9 and 45%, while the incidence of adrenocortical carcinoma (ACC) in MEN1 patients has been reported between 2.6 and 6%. In the literature data only unilateral development of ACCs in MEN1 patients has been reported.

We report a 31 years-old female MEN1-patient, in whom hyperplasia of the parathyroid glands, prolactinoma, non functioning pancreatic endocrine carcinoma and functioning bilateral adrenal carcinomas were diagnosed. Interestingly, a not previously described in the literature data, novel germline mutation (p.E45V) in exon 2 of MEN1 gene, was detected.

The association of exon 2 mutation of the MEN1 gene with bilateral adrenal carcinomas in MEN1 syndrome, should be further investigated.

Author: John Griniatsos, Nikoletta Dimitriou, Athanassios Zilos, Stavroula Sakellariou, Konstantinos Evangelou, Smaragda Kamakari, Penelope Korkolopoulou, Gregory Kaltsas
Credits/Source: World Journal of Surgical Oncology 2011, 9:6

Copyright by the authors listed above - made available via BioMedCentral (Open Access). Please make sure to read our disclaimer prior to contacting 7thSpace Interactive. To contact our editors, visit our online helpdesk. If you wish submit your own press release, click here.

From http://7thspace.com/headlines/370698/bilateral_adrenocortical_carcinoma_in_a_patient_with_multiple_endocrine_neoplasia_type_1_men1_and_a_novel_mutation_in_the_men1_gene.html

40 Days of Thankfulness: Days Thirty-one through Thirty-five

Day 31, November 14: Dr. Roberto Salvatori and Johns Hopkins. I found Dr Salvatori to be wonderfully kind, interested and knowledgeable. He listened thoughtfully to my complaints and never suggested that I was simply "fat and depressed". In the first visit, I learned things about my diagnosis that my previous endo had completely skipped. I feel confident that he will take care of any future endocrine issues. It didn't hurt that he was showing my website and bio around to other staff when I went for an appointment!

Day 32, November 15: Facebook. What can I say? FB has brought me closer to people I might not have otherwise known.

Day 33, November 16: Bells. I love playing handbells. Nearly any bells but I really like the lower octave, the G3-B3 area.I'm not so good with 4-in-hand or shelley ringing. For more info about handbell techniques, there's a good article here.

Day 34, November 17: Computers. When the first computer came into this house I wasn't a happy camper. It cost far too much and I couldn't see any value in it at all. There was a tiny grey/yellow monitor, no hard drive. What good can come of this?

Things changed a bit over the years!

Day 35, November 18: Today is the first annversary of my one and only zipline experience. I’ve been thinking about since my kidney cancer surgery 3 years earlier. Since then, I figure I have “extra years” and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining.

What I wrote then:

Day Four, November 18, 2009: Belize City, Honduras

Today's Schedule!

From http://www.belizecruiseexcursions.com/BelizeCaveTubingZipLineExcursion.htm

Belize Enjoy two of the most exciting tours offered in Belize today, cave tubing and the canopy zip line excursions on your one day visit to Belize!

Your Zip Line adventure begins from the First Platform where you will "jump" from the first Platform to zip to the next Platform found 150ft away. Flying through the air surrounded by nature is the most exhilarating feeling ever encountered, the birds and Howler Monkeys found onsite will be at eye level making you one with the prolific nature Belize is famous for.

The Zip Line Adventure consists of 8 Zip Line Platforms each strategically located within the Rainforest canopy. Double cables (each capable of withstanding 2,000 pounds of weight, the requirement for this tour truly has nothing to do with weight but with the size of the safety equipment) are used for the ultimate safety. All landing Platforms are equipped with safety gear, handrails and Guides to meet your next landing as well as to ensure your personal safety throughout the tour. The Platforms are as high as 85ft into the Canopy and as far apart as 250ft!

On the second part of your exciting excursion you will then reach the Cave Branch System Welcome Area where you will be fitted with your life vest, (if you would like one) cave lamp and your tube.

The walk to the beginning of the first Cave Entrance is an easy gentle 30 to 40 minute stroll through the beautiful Belizean Rainforest. Your guide will take you through two dry caves where many stalagmites and stalactites can be admired along the way. Once we have reached our access point for your Cave Tubing adventure, you will be able to enter the crystal clear, refreshing river and enter the first cave. A picture of the first cave can be seen on our website but unfortunately the picture does not do the area justice as the cave entrance and color of the water is simply spectacular!

You will visit 1 full underground cave system (2 caves) within the Cave Branch System, you will also be guided to underground dry caves within the cave system, a treat only offered by our outfit, X-Stream Cave Tubing! As you approach the end of your cave tubing experience you will float through small fun rapids where you will pickup some speed and end the cave tubing ride in style, bringing you right back to the starting point of your Cave Tubing adventure. Tropical Fruits are offered following your excursion.

If a picture is worth a thousand words the following pictures should give you a great description of both tours.

---

Trekking in the Belizean Rain Forest, an easy 30 minute walk with your tube cave tubing entrance

Walking through a cave on the way to the river for the cave tubing

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In the Rain Forest, an easy 30 minute walk with your tube to the river tubing entrance

Off we go on our Xtreme Cave Tubing Adventure

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Regular Cave-Tubing entry and our guides assist you if you need help

Floating through the Belizean underworld

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Exploring the cave system and various formations by the glow of the cave lights (head lights?)

The famous cave wave

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The short walk through the rainforest to reach the first platform.

The Guides instruct the Zip method and explain the cables, platforms and itinerary. You can see the double cables.

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Getting ready for the first jump to the first platform 85ft in the air!

Zip lining away!!!!

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One of the many platforms found high in the canopy

Wayyy up!

---

At the end of the Zip Line Excursion you will repel from the last platform back down to Earth.

Easy does it. This is the experience of a lifetime!

Up and at ‘em early this morning.

This is finally the zipline day I’ve been thinking about since my kidney cancer surgery 3 years ago. Since then, I figure I have “extra years” and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldn’t go with me but Michael would so I set this up almost as soon as we booked this cruise.

Our tour left first so after breakfast, Michael and I got on the tender for Belize. Tom’s tender was about 45 minutes later. Even though the tender went zipping along, it was about 20 minutes to shore.

We got on our bus with about 30 other brave and not-so-brave folks and our guide, Eddie, told us a bit about Belize City, Belize in general and what to expect on our tour.

Belize City used to be the capital of British Honduras (as Belize was formerly named) but it’s 2 feet below sea level and prone to hurricanes so the capital was moved to the other city – Belmopan in 1970. It was almost entirely destroyed in 1961 when Hurricane Hattie swept ashore on October 31.

Because of the altitude, graves are all above ground.

The main languages are English (the official language), Spanish and Kriol. Eddie said the kids learned English in school but, as soon as they were out, it was back to the Kriol. They wear uniforms to school.

Bordering on Mexico, Guatemala and the Caribbean, Belize is the second smallest country in Central America (after El Salvador), with an area of approximately 9,000 square miles that includes numerous small islands off the coast known as cayes.

More than half of the mainland is covered with dense forests, and at its longest point Belize is 174 miles long while its greatest width is 68 miles. Long a strong advocate of environmental protection, the government has set aside approximately 20% of its land as nature reserves.

There are also several important Mayan sites situated on the mainland such as Altun Ha and Xunantunich that make for excellent day trips and are included on shore excursions by most cruise ships. As a matter of fact, Belize has the highest concentration of Mayan sites of all the countries in Central America.

Eddie tried to tell us that our tour would be scary – but FUN, it would be hard – but FUN. He himself had done the zipline only once, because he had to for this job. He said that the caves might have things brushing up against us but they would be leaves and twigs. The caves might have “log-gators” in them, too.

We travelled along the 37-mile drive along the Western Highway – the scenery changed from city to suburbs, to a settlement called Hattieville where hurricane survivors met to life after the country was destroyed, to the beginnings of the rain forest.

We turned down a road to a jaguar preserve – yes, they have them here! then, finally, to our destination, Caves Branch National Park.

Eddie handed out water (which we had to leave on the bus). A bathroom break, then off to the zipline area.

Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.

We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldn’t get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn't. They also didn’t have cave pictures or T-Shirts. What a missed opportunity!

This was so cool, so much fun. I thought I might be afraid at first but I wasn’t. I just followed instructions and went.

Sometimes they told us to break. We did that with the right hand, which was always on the upper cable.

After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldn’t figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.

After that, no more problems with braking!

The next platform was very high – over 70 feet in the air – and the climb up was difficult. It was very hot and the rocks were very uneven. I don’t know that I would have gotten to the next platform if Michael hadn’t cheered me on all the way.

We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.

But, I did it! No fear, just fun.

Here we are, after getting our gear off. The people behind Michael are just starting out on their zipline adventure. I thought maybe we could go again…?

Next stop was lunch in the trees. It was a buffet similar to those in Barbados – a jerk chicken (Eddie had said it would taste like chicken – might be egret, road kill, log-gator or even…chicken!), peas and rice, a pasta salad, cake, fruit salad, the usual fare.

Next up, cave tubing! This is the event I got my new waterproof camera for. Thanks again, Alice! If you're interested in reading the cave tubing part, it's here: http://www.cushingsonline.com/cruise/cruise2009.htm

Posted via email from Cushings Help

40 Days of Thankfulness: Days Twenty-Two through Thirty

I haven't been too great on keeping this list up online but I have been keeping up on my computer so there will be a few catchup posts like this one.

Day 22 (November 5): Jack Canfield's book Chicken Soup for the Surviving Soul: 101 Healing Stories About Those Who Have Survived Cancer.  There is a great piece in there called The Best Day of my Life.  I've written about it before on http://cushingshelp.blogspot.com

Day 23 (November 6): Lou Argow.  She's been my counselor for many years, starting with my terrifyingly real dreams of death. Thanks, Lou!

Day 24 (November 7): SusanM on the message boards.  She did something so wonderful for me a few years ago, words can't even describe it.  Fortunately, I have described it before. :)  Read more here!  People on the message boards can check this thread out.  Thanks again, Susan!

Day 25 (November 8): Travel.  I've been fortunate to be able to travel to several interesting places.  Some, like Iceland, we just lucked in to.  We' wanted to go to Ireland but the travel agent couldn't get us in at any time over that summer.  She did get us a deal where, if we flew Iceland Air, they'd give us a free week in a hotel in Iceland before flying us to London.  Duh!  Wonderful trip.

Day 26 (November 9): My dear friend, and sister I never had, Alice.  We've only met twice in person but we talk for several hours about every other day.  We're closer than any of my local friends.  Happy Birthday, Alice!

Day 27 (November 10): TiVo.  I love that I can fast forward through commercials and have all my favorite shows waiting for me when I lie down on the sofa (and fall asleep!)  I probably wouldn't have gotten one of these when we did but our son got us one for Christmas.  He had it all set up and ready to go on Christmas morning.  At that time, I had no idea of its capabilities but now, I don't think I could live without it!

Day 28 (November 11): Veteran's Day.  I am thankful for those who have served and are serving now.  My husband served during the Vietnam-era although he never had to go to Vietnam.

Day 29 (November 12): Crockpot.  Yay!

Day 30 (November 13): Rainbows. I have a special affinity for them.  To me, a rainbow is a sign that things are going to be ok.  Years ago, our little family was in Florida.  I felt guilty about going because my dad was terminally ill with his second bout of colon cancer.  I was worried about him and said a little prayer for him.  I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow.  It was a perfectly clear, sunny afternon.   I even called the people out of the water, in case it was something I wanted to see that didn't really exist.  They saw it, too.

Where in the world did that rainbow come from, if it wasn't a sign?

Pancreatic islet cell carcinoma presenting with concurrent Cushing's and Zollinger-Ellison syndromes: case series and literature review

European Journal of Gastroenterology & Hepatology:

February 2010 - Volume 22 - Issue 2 - pp 246-252

doi: 10.1097/MEG.0b013e3283314827

Case Reports

Said, Rabih

Cushing's syndrome and Zollinger–Ellison syndrome occur occasionally as a result of neuroendocrine cancers. The concurrence of the two syndromes has been considered to confer a poor clinical and therapeutic outcome.

In this study, we are reviewing two patients with pancreatic islet cell carcinomas and with both Zollinger–Ellison and Cushing's syndromes, one followed up for more than 5 years, and the other still receiving therapy, 5 years since diagnosis. A literature review showed that surgery has limited utility as the majority of these patients had metastases at the time of diagnosis.

Proton-pump inhibitors, ketoconazole, and somatostatin antagonists have a major role in controlling symptoms. Interferon and systemic chemotherapeutic agents play a role in the management of metastatic and fast-growing cases. Chemoembolization and bland embolization show encouraging results in controlling liver metastases. The latter was used effectively and more than once in the two patients presented herein.

On the basis of recent molecular genetics studies, target therapy may be helpful, however, ongoing trials will define it's utility. As the data confers a worse prognosis versus other pancreatic neuroendocrine tumors, the relatively favorable outcome of the two patients reported herein may reflect the impact of multiple therapeutic modalities.

From http://journals.lww.com/eurojgh/Abstract/2010/02000/Pancreatic_islet_cell_carcinoma_presenting_with.20.aspx

Addison's Disease – Will Your Insurance Cover the Price of Therapy?

Addison's disease was first described by Dr. Thomas Addison, whom the disease is called after, in 1849. Also known as adrenal insufficiency, Addison's is a malfunction of the adrenal glands which causes the glands for fail to supply sufficient of the hormones cortisol, aldosterone, or both. It's an uncommon condition that is typically brought on by harm to the gland by an autoimmune dysfunction or an infection. It is a considerably silent disease in that the signs progress so slowly that the particular person does not realize they've the disease till they expertise a very stressful scenario and the adrenal gland fails to supply sufficient hormones to help the physique deal with it.

The primary remedy of Addison's disease is through medication. Patients are prescribed hormone replacements resembling hydrocortisone or prednisone for cortisol insufficiency and a mineralocorticoid for aldosterone insufficiency. Depending on the underlying explanation for the disease, secondary remedy may be necessary. For example, autoimmune issues are the principle explanation for Addison's. Therefore, your doctor could prescribe additional medications and treatments to handle that downside as well. Cancer of the adrenal gland is also a explanation for this disease and you may need surgery and chemotherapy to do away with the cancer.

Insurance firms will probably cowl the cost of your medical care since remedy typically entails doctor's visits and medication. You will most likely be scheduling common appointments along with your doctor, so when you find yourself searching for health care insurance coverage be sure to evaluate the cost of copays for office visits. Additionally, you will want to find a plan that may pay some or the entire cost of your prescription drugs since there is no cure for Addison's disease and you will be on treatment for the rest of your life. Having your insurance coverage firm decide up the tab will save you money over the lengthy term.

Addison's disease is classed as a preexisting condition. Therefore, if you change insurance policy you may be subject to a ready period or end up paying increased premiums to your plan. To help you discover one of the best deal within the shortest amount of time, use a medical health insurance quote web site to get insurance coverage quotes from a number of providers. You will be able to do a facet by facet comparability of the completely different plans supplied which is able to make it simple to see how a lot you will be paying out of pocket to deal with your illness.

Untreated Addison's is potentially fatal but, with the correct medical care, you may reside a protracted and healthy life.

From http://www.pillowtalkmedia.com/uncategorized/addisons-disease-will-your-insurance-cover-the-price-of-therapy/

A Really Great Book on Patient Empowerment

I'm really enjoying this new book “Laugh, Sing, and Eat Like a Pig”  by "e-Patient Dave".

From amazon.com:

"e-Patient Dave" deBronkart was diagnosed in 2007 with renal cell carcinoma (kidney cancer) (MaryO’Note: my cancer!) at a very late stage. His median survival was just 24 weeks; with tumors in both lungs, several bones, even in muscle, his prognosis was "grim," as one web site put it.

Online since 1989, Dave used every resource at his disposal: a strong mental attitude, online research, great treatment at Boston's Beth Israel Deaconess, online medical records, an online journal for family and friends, and online forum of kidney cancer patients. He beat the disease in less than a year, then discovered "e-patients," who participate actively in their healthcare. He began blogging as e-Patient Dave.

An accomplished speaker and writer before his illness, today Dave is engaged in opening health information directly to patients, as public speaker, policy consultant, and Founding Co-chair of the Society for Participatory Medicine. He's testified in Washington, appeared in Time, US News & World Report, the Boston Globe, and was named to the HealthLeaders "20 People Who Make Healthcare Better."

"This is the first time in my life I've felt I have a calling," says Dave, "something I can't get away from: it's what I need to do. I've had plenty of fulfilling jobs in a great career, but not a calling. This is it."

I’ve been “following” Dave on Twitter and elsewhere for over a year.  When I was participating on my kidney cancer message boards (ACOR) a little more actively, Dave’s information was always the best, and he shared his experiences so honestly and openly.

I was so glad when he compiled those experiences and knowledge into this book. 

I understand what he means about a calling.  I’ve often felt that Cushing’s was my calling, too.  I’m too shy to get out there and testify but I can sure use my computer to get info out there.

Hopefully, more and more people will become empowered and take control of their own health.

I’m about halfway though this book.  My favorite quote (so far) is Reality is what it is,
regardless of what we think
and whether we know it or not.

 

To find Dave: 

• http://epatientdave.com/
• http://patientdave.blogspot.com/
• http://twitter.com/epatientdave
• http://www.boston.com/lifestyle/articles/2009/05/18/the_excellent_patient/
• From an interview on this page:
  

Q. What can patients do?

A. Patients can help. Docs are under continuous and increasing time pressure, they don't get paid for research - there's no insurance billing code for it - and the volume of new research to plow through is ever-increasing, and sometimes patients can help dig out information that adds to what the docs have at their disposal.

• and many more…

Adrenal Disorders: Cushing's Disease & Cushing's Syndrome

The production of cortisol by the adrenal glands is stimulated by ACTH (Adrenal Cortical Tropic Hormone), which is produced by the pituitary gland in the brain. Thus, overproduction of cortisol can be caused by either a tumor in the pituitary gland (Cushing's disease), or in the adrenal glands (Cushing's syndrome). Less commonly, a tumor producing too much ACTH may be found outside of the pituitary gland. In patients with Cushing's disease, the blood levels of both ACTH and cortisol are elevated. In patients with Cushing's syndrome, the blood level of cortisol is increased in the setting of a low level of ACTH. Rarely, adrenocortical cancers may cause Cushing's syndrome.

Diagnosis

There is a great deal of variability throughout the day in the amounts of cortisol produced by the adrenal glands. For this reason, the most sensitive test measures the amount of cortisol excreted in the urine over a 24-hour period. A 24 hour free cortisol level greater than 100 µg is diagnostic of Cushing's syndrome. Patients suspected of having Cushing's syndrome will also undergo a dexamethasone suppression test which helps to determine the cause of the increased cortisol production. A CT or MRI scan is used to determine the location of the tumor.

Treatment

Patients with Cushing's disease typically have benign tumors of the pituitary gland in the brain. These patients are referred to a neurosurgeon for removal of the tumors. If removal of the pituitary tumor and medications fail to control Cushing's disease, removing both adrenal glands may be indicated. In patients with Cushing's syndrome, an adrenalectomy—surgical removal of the adrenal gland—is curative. This operation is usually performed laparoscopically, through several very small incisions.

From http://www.columbiasurgery.org/pat/adrenal/cushing.html

Four Years Post-Op Kidney Cancer Surgery

Yesterday was my 4-year surgery anniversary.  Amazing how time flies.  If anyone had told me then that I’d have four years to live, it wouldn’t have seemed like “enough”, though.

Four years ago yesterday was also the first (and only!) Cushie Cruise, leaving for Bermuda on Mother’s Day.  I wasn’t able to go due to financial reasons, but a very kind Cushie Angel made it possible.  I got new clothes, and was very excited.  I’d never been to Bermuda.

So, along comes this surprise cancer.  I told my surgeon-to-be while still in the ER about this cruise and he said no way could I go.

I ended up getting out of the hospital the day before the cruise, the day before Mother’s Day, and the doctor was right.  There would have been no way I could have gone and enjoyed this cruise.  It was a few weeks before I could even walk, and several days before I could consider getting off pain meds.

Another lucky Cushie got to go in my place, so all was not lost.  I got to use my new clothes on a “second chance” cruise and I’m now 4 years cancer free!

Happy endings all around!

Here’s a review of the cruise by other non-Cushies with lots of pictures: http://www.cruisereviews.com/RoyalCaribbean/ExploreroftheSeas115.htm

If you’re a member of the Cushing’s Help message boards, you can see cute pictures of “Penelopee Cruise” at http://cushings.invisionzone.com/index.php?showtopic=16494.  Penelopee was made from someone’s 24-hour UFC jug.  The pictures and captures are a real hoot.

At four years post-op, I have no signs of my cancer returning or showing up in another organ.  (Hooray!)  I do have an enlarged lymph node between my lungs but that seems stable at this time.

Energy levels are still very low thanks to the combination of post-pituitary surgery panhypopituitarism, the removal of one adrenal during kidney surgery and low-functioning remaining adrenal.  Beats the alternative, though!

Daily (l-o-n-g) naps are a must and, I guess, will always be.  Doctors haven’t seem to come up with any ideas for extra energy for me.

I don’t have any lingering symptoms from my bout with cancer, so it’s all good.

As I learned to say in church yesterday, despite my illnesses, “I am blessed!”

Environmental Issues and Cushing’s

We’ve had quite a bit of discussion on this topic on the Cushing’s Help message boards lately.  A few samples:

We live in a part of Ontario known as "the Chemical Valley". We are surrounded by Dow Chemical, Imperial Oil, Dupont, British Petroleum, Shell Oil and about 12 other chemical plants.

There has been many people complaining about the high rate of cancer in our area and the government was forced to do a health study in our area but as of yet they haven't figured out how to do the testing. My guess is they don't want us to know how sick we really are.

We are part of the Goiter Belt which I think extends to PA. There are very few people here who do not have thyroid problems.

My 2 brothers and 2 sisters are suffering the same as I am and so are all our children! Both my parents died in their 50's from untreated hypothyroid disease. Probably had adrenal/pituitary damage too when I think about their symptoms.

I see hypothyroid people everywhere I look and have since started checking for the hump and cushing signs.

Holy endocrine system Batman, I think we are all suffering at the hands of the Big Oil Companies. My husband works for British Petroleum!!!!

I hate to even think about it. Growing up in Buffalo - erie county new york, which is nestled between lake ontario & lake erie, I don't believe the water is safe to drink. There are several epa areas of concern around lake ontario & lake erie. AOC's (areas of concern) are highly polluted areas. Specificlly erie canal & buffalo river are awful. I found out some years ago that a playground that I frequented as a child was a landfill for hazardous chemicals. Now I have a pituitary tumor, coincidence? Probably not

I live near Green Bay WI, which is part of Lake Michigan. I believe our drinking water comes from the Bay. The water is polluted from the papermills (PCPs). I also did play on a heavily fertilized and treated lawn from a chemical company for at least 5 years when I was little. I had a thyroid nodule removed, hypothyroidism, and I am still in the testing phase to see if I have a pituitary tumor. My father also has hopothyroid, and seems to have kind of a hump. He has had cancer as well.

I remember the nuclear accident in the 80's. It was really scary. I remember them saying something like it was worse than what they reported.

This is one of my future quests, I live in a town on 10,000 people and there are many cases of brain and pituitary tumors, I hear it all the time, I know of at least 3 definite pituitary cushing's cases in my small town. My future goal when I am feeling better is to put my story in the paper, have people call me if they or someone they know has a funtioning pituitary tumor, also brain tumors and brain cancer has some large numbers too. The state sent me a letter I had to fill out when I first found out about my tumor, it was manditory, if I did not fill it out they where going to have my doctor fill it out so I did. So somewhere someone is keeping track of brain tumors in my town. I want to find out the numbers, if it is as bad as I think it is I am going to calll CDC to find out why. I also want to start a support group. But I need to feel better first because this is going to be a big undertaking.

There are many more postings on this topic.

From Wennersten: There’s something in the water

Scientists now tell us there is something in our waters that we least expected.

That “something” is a class of chemicals called endocrine disruptors, and Dr. Vicki Blazer, a fisheries biologist at the United States Geological Survey, thinks the chemicals are responsible for the high concentrations of intersex fish found in the Potomac, and other rivers in the mid-Atlantic.

The chemicals also prove a threat to human health, but a bit of explanation, first.

Our body’s endocrine system is a complex network of glands and hormones that regulate growth, development, and the operation of various organs. The endocrine glands (for example the thyroid, adrenal, pancreas, testes, ovaries and pituitary glands) release hormones that act as chemical messengers and regulate many life functions.

Endocrine disrupters are chemicals that interfere with this system, by either acting like a hormone, or blocking a hormone’s function. They can be natural, but many are man-made such as PCBs, dioxin, DDT and other pesticides, pharmaceuticals and plasticizers. They are found in many products, including plastic bottles, metal food cans, detergents, flame retardants, food, toys, cosmetics and pesticides. They enter the environment and are now commonly found in our streams, rivers, bays and oceans, where scientists are observing problems.

Then Great Lakes Area of Concerns shows a map of problem areas

Forty-three AOCs have been identified: 26 located entirely within the United States; 12 located wholly within Canada; and five that are shared by both countries. Two Canadian AOCs have been delisted and one U.S. AOC has been delisted leaving 30 AOCs remaining on the U.S. side of the border.

RAPs are being developed for each of these AOCs to address impairments to any one of 14 beneficial uses (e.g., restrictions on fish and wildlife consumption, dredging activities, or drinking water consumption) associated with these areas.  USEPA has assigned RAP Liaisons for AOCs.  Sediments have been identified as serious problems in many AOCs. AOC Principles and Guidelines have been finalized for formally delisting these areas as beneficial uses are restored.

What do YOU think?  Are you in one of these areas? Check out this post on the Cushing’s Help message boards  and be heard!

Novartis seeks to expand cancer drug portfolio

By Alaric DeArment

BASEL, Switzerland (Dec. 11) Novartis hopes to maintain what it calls its leading global position in cancer treatments with a wave of regulatory submissions in the coming year, the Swiss drug maker announced at a recent investors meeting.

By the end of the 2009, the company plans to file regulatory approval applications seeking to expand the use of Tasigna (nilotinib) and Zometa (zoledronic acid) as treatments for various cancers and make as many as five other regulatory submissions in 2010 for Afinitor (everolimus) and drugs in clinical trials.

“We have a productive and innovative pipeline that holds promise for many patients,” Novartis Pharmaceuticals Division CEO Joe Jimenez said. “The benefits of our sustained R&D investments are reflected in the nearly 30 major regulatory approvals achieved so far in 2009 in the U.S., Europe, Japan and China. A further 27 projects are currently in late-stage clinical trials, while eight more projects are awaiting regulatory decisions.”

Drugs in clinical development include SOM230 (pasireotide), for which Novartis will seek approval in 2010 as a treatment for Cushing’s disease, carcinoid tumors and acromegaly, and LBH589 (panobinostat), for which the company will seek approval that same year as a Hodgkins lymphoma treatment.

From http://drugstorenews.com/story.aspx?id=125727&menuid=787

I was drawn to this blog post…

…because the author mentioned that she had both Cushing's and cancer, a kind of unusual combination.

1974 to Today: Seal it up
By Experience
I still haven't heard what the consensus is on my aftercare: Cushing's and Cancer. I don't know what I will be expecting to feel like after surgery. My endocrinologist said that I should get sick after the surgery and need some kind of ...
1974 to Today - http://1974totoday.blogspot.com/

I don’t usually comment on blog posts but I did on this one because we seem to share so much, disease-wise.

I said

Hi, I was drawn to your blog post because I have a blog with the same name, Cushings & Cancer.

I had my Cushing's long ago and my cancer (kidney aka renal cell carcinoma) was 3 years ago but I sure know where you're coming for.

My surgeon contacted my endo for the amounts of steroids during surgery (they came through the IV) then post-op, they kept cutting my dose in half until I was back down to normal.
Generally, you stress-dose after surgery if you feel like you have a flu coming on. Has your endo given you Cortef or another steroid to take for emergencies like this? Sometimes, they will give you an injectible to be faster acting.

Best of luck with the cancer surgery AND your Cushing's.
MaryO

I sure hope that this isn’t a trend, Cushies getting cancer although I know of a couple others on the boards getting cancer.

I suppose Cushing's doesn’t make us any more immune to other diseases but it seems like it should.

Haven’t we already “done our time”?

OTOH, I have a friend with a serious cancer (aren’t they all?)  who recently learned that she has a second, unrelated, cancer.  Makes you wonder sometimes.

On a semi-related note, I had mentioned in this post that I was having CT scans again because of those lung nodules and a recently-found enlarged mediastinal lymph node.

On the recent scan, there was no change to anything.  The lymph node is still enlarged, so my options are the same now as they were this summer.  Wait 3 months and do anther scan or go right to a biopsy, which sounds like no fun at all – they make an incision in your throat…

So, once again I wait.  It seems like so much of my life is spent waiting for test results.

Encouraging Cushies

Although these were written for people with fibromyalgia, these ideas would also work for someone with Cushing's.  8 Ways to Encourage a Chronically Ill Mom

I especially liked number 4:

Avoid telling her about the cures you’ve heard for her illness, the juice products you may sell that could help her, or about your mother’s cousin’s sister who has the same illness but still manages to raise five children and work full-time. Don’t comment that the diet she is on is harmful, that the medications are just a bunch of poison or say, “don’t you realize those doctors are just out to make money off of you?” She’s heard it all and if you can be her safe haven from that it will result in a deeper friendship.

I can’t remember how many suggestions I’ve had to fix my Cushing’s, my lack of energy, my fears of cancer recurrence.

I should take fish oil capsules, essential oils, selenium, antidepressants, SAM-e, join yet another gym, rejoin Weight Watchers, buy a Wii Fit…

Tried them all and none of it helps.

Read that article and send it to all your friends and relatives!  Her book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Conquering the Confusions of Chronic Illness), is out of stock but I’m adding it to my wish list!

What ideas have people suggested to you?