Tuesday, June 30, 2009

Crunching the (Sometimes Surprising) Numbers on Hormone-Related Disease

BALTIMORE, June 29 (AScribe Newswire) -- A dogged review of the medical literature has produced what is believed to be the nation's first comprehensive estimate of the extent of dozens of endocrine disorders in the United States.

Unsurprisingly, say the Johns Hopkins researchers who gathered the data, obesity and related conditions including metabolic syndrome and diabetes were the most common disorders and had the highest estimated rate of new cases per year -- what experts call "prevalence" and "incidence" respectively. However, the review also shed light on the significant impact that several other conditions have at the population level, such as osteoporosis. Surprisingly, the researchers say, their review showed that this bone-thinning condition appears to affect men and women nearly equally, with about seven percent prevalence for both sexes.

Health professionals have long assumed that osteoporosis occurs primarily in women after menopause, as a consequence of estrogen hormone loss.

"Endocrinologists confidently talk about how common or uncommon certain hormone-related conditions are, but we were lacking the hard numbers. Now we have compiled real data based on U.S.-based clinical studies," says Sherita Hill Golden, M.D., M.H.S., associate professor in the division of endocrinology at the Johns Hopkins University School of Medicine.

Golden says many endocrine disorders appear to be on the rise in the U.S. and around the world, but scientists have never amassed hard numbers in a unified source of prevalence or risk as they have for such medical conditions cancer and heart disease.

"Without such information, it's hard to get public health decision makers to focus on all endocrine disorders, develop preventive strategies, and allocate the right level of funding for research and treatment," Golden says.

To address the lack of information, Golden and her colleagues searched medical article databases for prevalence and incidence data for 54 endocrine disorders with both clinical and public health significance, identifying 2268 studies. They concentrated on the most recent (since 1998) 70 articles that had the most rigorous data on the general population, as opposed to studies involving small groups of patients from specialty clinics that see higher numbers of endocrine disorders.

Reporting In the June Journal of Clinical Endocrinology and Metabolism, Golden and her colleagues found, as expected, that obesity-related diseases such as diabetes were the most common endocrine disorders in the U.S., with 25 to 28 percent of the U.S. population being clinically obese and 10 percent having type-2 diabetes. The review suggests that more than a third of the population has metabolic syndrome, a collection of obesity-related conditions including blood fat disorders, insulin resistance and the presence of inflammatory proteins that increase the risk for heart disease and stroke.

The review also found that type-1 diabetes and tumors of the pituitary gland are among the least common endocrine disorders, affecting less than one percent of the population. Golden notes that there is a general lack of multi-ethnic, multi-racial studies, research needed to determine variable risk in specific populations.

The study was funded by a grant from The Endocrine Society.

Other researchers who participated in this study include Karen A. Robinson, M.Sc., Ian Saldanha, M.B.B.S., M.P.H., Blaire Anton, M.L.I.S., M.S., and Paul W. Ladenson, M.D.

       For more information, go to:



       - - - -

       CONTACT: Christen Brownlee, Johns Hopkins Medicine Media Relations and Public Affairs, 410-955-7832, cbrownlee@jhmi.edu


From http://newswire.ascribe.org/cgi-bin/behold.pl?ascribeid=20090629.105519&time=11%2007%20PDT&year=2009&public=0

Monday, June 29, 2009

Cushing's: Bleaching is alive and well in sunny Jamaica


Monday, June 29, 2009

THE phenomenon of skin bleaching is alive and well in Jamaica. The recent seizure by customs of goods containing a selection of bleaching creams only proves the point.


Bleaching is the application of chemicals to the skin to obtain a fairer colour. It may also be referred to as toning.


Usually the chemicals used contain hydroxyquinone or cortisone, eg Bethamethasone, R Triamcinilone, Clobetasol or Mercury. Usually the chemicals are obtained by illicit means and as that customs bust proved, not even the government is able to collect tax revenues on these drugs.


So much can be said for government's control of these chemicals. Every wholesale in Kingston has these drugs for sale. At every street corner in downtown Kingston these drugs are available. Men are bleaching, women are bleaching, boys and girls are bleaching. At every Passa Passa fete you will see a lot of girls who are bleaching, or just take a drive into the ghetto and you will see girls, their faces covered with a white cream busily bleaching.


The question naturally arises, what can be done? We need a new educational policy. Last year we had a drive that was put on by the pharmacy board at the Ministry of Health, where we went to the schools and to the libraries and spoke to the kids. I believe that it was successful but it was discontinued. We need to get back to the drawing board and get a new strategy to deal with this problem.


We approve of the ad shown on national TV showing a lady saying that she would never bleach her skin, but the usual response from our patients is, "She nuh know nuttin, she a eediat", completely dismissing the message that bleaching will damage their skin.


The preparations containing mercury are illegal because mercury is a toxic chemical which accumulates in the body and leads to some serious problems like liver disease. Mercury products are therefore banned worldwide but still find themselves unto our streets.


Hydroxyquinine products are used in medicine by dermatologist and by doctors. They should not be used carelessly as they may have the effect of causing onchynerosis in which there is the development of ugly dark spots on the skin caused by the deposition of melanin - the pigment of the skin deep in the second layer of the skin.

Cortisione preparations are used again by dermatologists and in medicine but these preparations should be obtainable only with a doctor's prescription. They should only be used for a week or at the most two weeks before their use is assessed by a doctor to ensure that they are not causing any harm.
If these products are used for a long time they can cause the appearance of stretch marks.

Thinning of the skin, a severe form of acne called steroid acne and the appearance of a lump of fat at the back of the neck called cushings syndrome are also results. The face can also become round and moon like and there can also be wasting of the limbs.

If enough of the steroid is absorbed we can get high blood pressure and diabetes and if the creams are used around the eyes we can develop glaucoma. In fact we expect to see more cancers of the skin as the melanin is removed by the bleaching and the skin is exposed to the harmful effects of the sun.


Despite all of this our people continue to bleach and the sales of these creams continue to flourish. As soon as we crack down on one product it resurfaces under another name and in a different packaging.


It is hard to believe that in the 21st Century in Jamaica the country which is the heart of black pride - a country which gave the world Garvey and Marley and Rastafari - is still bleaching.


From http://www.jamaicaobserver.com/magazines/AllWoman/html/20090628T210000-0500_154347_OBS_BLEACHING_IS_ALIVE_AND_WELL_IN_SUNNY_JAMAICA.asp

Chemicals and Endocrine Problems

Expert questions gas-drilling chemicals
Analyst says endocrine glands at risk

by Dale Rodebaugh
Herald Staff Writer

Article Last Updated; Monday, June 29, 2009
The toxic chemicals used to extract natural gas from deep underground and process it are among substances creating a dizzying list of embryonic - and subsequent - developmental aberrations in animals, including humans, an environmental health analyst is set to say tonight.


Theo Colborn, founder of Paonia-based The Endocrine Disruption Exchange, or TEDX, is scheduled to speak at 7 p.m. at the Center of Southwest Studies lyceum. The presentation is titled "What You Need to Know About Natural Gas Production: Made Easy." Colborn holds degrees in pharmacy, fresh-water ecology and zoology, and minors in epidemiology, toxicology and water chemistry.


Theo Colborn, the founder of The Endocrine Disruption Exchange in Paonia, will speak at 7 p.m. in the lyceum (Room 120), at Center of Southwest Studies at Fort Lewis College.


"I'll be talking about what we know about the chemicals used in drilling for and production of natural gas," Colborn said by telephone from Paonia. "I won't talk about exposure, but I'll explain what we know about the health effects from the chemicals."


A Durango nurse was sickened in July 2008 after she treated a gas-field employee who had cleaned a chemical spill near Bayfield. Bayfield is in the San Juan Basin, which includes much of the southern part of La Plata County, and is one of the largest gas fields in the country.


The public is dealing with an unknown - the composition of the substances used in the production of natural gas - Colborn said.


"The problem is non-disclosure on the part of the industry. They're not telling us everything," Colborn said. "We have limited information."


A modicum of accountability exists. The Colorado Oil and Gas Conservation Commission last year imposed new rules on the industry, including one that requires companies to disclose to state regulators what chemicals they use.


But technical studies abound on the chemical causes of certain health effects, Colborn said. TEDX compiled a list of 246 products containing 278 chemicals used in natural-gas operations in Colorado. The source list includes environmental impact statements, rule-making documents, accident and spill reports, the State Emergency Planning and Community Right-to-Know Act and material data safety sheets. Data safety sheets tell those who ship and use products about their physical and chemical characteristics.


"Colborn's talk is relevant to what goes on in La Plata County," said Josh Joswick, who coordinates gas, oil and energy issues at the San Juan Citizens Alliance. "A guy from Halliburton (an oilfield services company) spoke here May 14. He talked about how benign the chemicals used in natural-gas production are."


It's time to hear a credible, opposing view, Joswick said.


Christi Zeller with the La Plata County Energy Council, a nonprofit trade organization, said the industry is highly regulated by the Colorado Oil and Gas Conservation Commission and the Bureau of Land Management.


"We have the most extensive water-well sampling in the state," Zeller said. "We test wells through the life of the well. Not a single one has ever been impacted by fracing (the injection of liquids to fracture rocks to free gas)."


As for chemicals, Zeller said, "You need to name the chemical, determine its effects and explore the point and route of exposure. Let's get a certified toxicologist here. Our biggest fear is that the community will be alarmed by such reports."


Colborn, who established TEDX in 2002, testified June 9 before the U.S. House subcommittee on insular affairs, oceans and wildlife. She addressed the panel on endocrine-disrupting chemicals in the environment that affect wildlife and humans. The endocrine system is the network of glands (pituitary, adrenal, thyroid, thymus, ovary and testes) that release hormones that regulate fetal development, growth, metabolism and tissue function.

A U.S.-Canadian commission in 1990 found that chemical-safety tests were failing to protect people, Colborn told committee members. Six years later, Congress told the Environmental Protection Agency it had "failed miserably" to detect endocrine disruptors. Today, Colborn said, the developed world is confronting a "pandemic of endocrine-related disorders, including attention-deficit hyperactivity disorder, attention deficit hyperactivity disorder, autism, diabetes, obesity, childhood cancer, testicular cancer in young men and infertility."


The existence of industrial chemicals, many considered proprietary, weren't commonly known until they were found in the environment, Colborn said. Companies that extract natural gas use proprietary fluids laced with endocrine-disrupting chemicals - with little or no oversight - as if they were perfectly safe.



From http://durangoherald.com/sections/Features/Health/2009/06/29/Expert_questions_gasdrilling_chemicals/

6 new Cushing's bios added. dx include 1 adrenal, 3 pituitary, 2 undiagnosed http://ping.fm/dOAV2
Cushing's locations page updated, 6 new people added. http://ping.fm/zscY3

Cushing's Disease: Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career

Throughout her 20s and 30s Carol Perkins lived a dream life. She traveled the world as a Ford model and appeared in magazines like Vogue and Harper's Bazaar. In her early 30s she continued modeling for clients like Victoria's Secret and started performing with magicians Penn and Teller. When she wasn't working she was out on the town, at art exhibition openings, theater events, and nightclubs. Home was a loft apartment in Manhattan. "It was a fashionable, fast-paced life," Perkins says. "Definitely glamorous."


Then she got sick. "I started getting dizzy and having severe headaches," she recalls of 1995. Even worse for her career, her weight shot up by 70 pounds. She developed a hump between her shoulders and noticed hair growth on her chin. Doctors prescribed antidepressants, weight-loss pills, and migraine medication, but nothing helped. As the bizarre symptoms intensified, Perkins could no longer work. "I was disfigured and unemployable," she says. "I kind of hunkered down and lived off my savings."


In a short time Perkins had gone from jet-setter to shut-in. Many friends, unable to deal with her illness and physical transformation, stopped coming by. "It was a really dark downward spiral," she remembers. Two things kept her from complete despair: dogs and sewing. Perkins had always loved animals, so much so that she'd once considered going to veterinary school. But her travel-heavy career had made it impossible for her to have a pet. Now homebound, she began pet-sitting for friends and neighbors. "They were my emotional support dogs," she says. "Dogs don't care if you're fat -- they love you unconditionally." Perkins also loved to sew, and she began making robes, sweaters, and dog beds as gifts for her canine guests. "There's such a joy in making something with your hands," she says. "I was really grateful to have a purpose."


A year and a half later Perkins was finally diagnosed with Cushing's syndrome. In her case the rare illness was caused by a tumor on the pituitary gland, which made her body produce too much cortisol and led to her many strange symptoms. Two weeks later she underwent brain surgery to remove the tumor. When she awoke, "It was like a weight had been lifted," she recalls. "I decided right then that I was going to devote myself to helping animals and people."


Back home, Perkins faced a long recovery as her brain healed and her body chemistry returned to normal. But the animals continued to visit, and she kept up her crafting with a newfound purpose -- to turn her hobby into a career. An opportunity arrived sooner than expected. Just a few months after Perkins's surgery, an editor at a fashion magazine happened to see a dog bed she'd made as a gift for a neighbor's pug. The bed was featured in the magazine's May 1997 issue. Perkins had never sold any of her crafts before, but her company had launched -- whether she was ready or not. "The phones were ringing and buyers from Bloomingdale's were ordering," she says. She scrambled to fill those orders, then decided she'd better figure out how to really start a business. "I was the typical entrepreneur in that I didn't have a clue." Perkins spent most of 1998 and 1999 doing research and development, still filling orders from her kitchen table.


In 2000 she launched her company for real. She cashed in all her assets, traded New York City for Savannah, which was more affordable and closer to the textile mills she needed to work with, and opened up Harry Barker. "All dogs are hairy barkers," Perkins explains. Then she finally adopted a dog of her own, a sheltie-collie mix she named...Harry Barker.


Perkins not only found success in business but she also found love: She met her future husband, David Rawle, on a blind date and at 45 became a first-time bride, moving to Charleston to live with him. Today Perkins, 51, and Rawle, 66, share their home with Harry Barker and Josephine, a briard. Harry Barker, the company, has seven fulltime employees and operates out of a dog-friendly office in Charleston. The pet accessories for dogs (and, in more limited fashion, cats), such as collars and leashes, beds, toys, and treats, are available online at harrybarker.com and in 3,500 stores internationally.


And Perkins didn't forget that promise she'd made to do good things for people and animals. This year the company launched a line of dog treats and toys that benefits therapy-dog programs at a nearby hospital. Many of Harry Barker's products are hand-packaged by adults with disabilities through a community partnership with the local disabilities board. And a good number of items are earth-friendly -- a recently introduced line of environmentally conscious collars and leashes is made out of recycled plastic bottles. But as gratifying as those do-good initiatives are, says Perkins, the real joy of her new career is all about the dogs. "There's just something about a wagging tail that makes me happy."

From http://www.lhj.com/relationships/family/pets/carol-perkins/


On the Message Boards at http://cushings.invisionzone.com/index.php?showtopic=41697


Another success story/Article in Ladies Home Journal July 2009 Issue, About a model who had Cushing's disease and cured with 1 pit surgery


The article in the Ladies Home Journal is called Pet project and it is on page 80. I am writing a letter to the editer because, every article I have ever read always has such success stories, the cure rate for one pituitary surgery is not as good as they make it sound and I feel they need to be eduacated about the real stats on Pituiary surgery. Please fell free to edit and tear my letter apart, I want it to be right when I send it in, so please edit away.....


Ladies Home Journal

Dear Sally Editor-in-Chief,

I think it is wonderful that you put an article about Cushing’s disease in your July 2009 issue featuring Carol Perkins and her Pet Project. It is wonderful to get the word out about Cushing’s. The only problem is every story I read in magazines about Cushing’s disease, the person goes on to have their surgery and they are cured or put into remission, and go on to live mostly normal lives. Well the truth is that is not always so accurate, I know thousands including myself that require second pituitary surgeries and if that does not work on these pesky little cells, we have to have a Bilateraladrenalectomy(BLA) and/or radiation. I had a BLA in 11/06 and am still not well. Cushing’s disease is very hard on our bodies, the longer you have it the more damage that is done from the high Cortisol. In high amounts it is like battery acid running through your veins, it destroys muscles, nerves, joints, veins, arteries, ect. It also takes away your memory skills; I was a Medical Assisting Instructor and have been home on disability since 8/2004. I have no memory left to teach, I cannot even sit down and read a book, I will forget the last chapter and have to start over. So you see, it is not quite as simple as the article makes it sound. There are many opinions out there on first pituitary surgery success rates, some say it can be cured or put into remission 80% of the time on the first try and some say 50% is more like it. Please do some research on this issue and maybe you could put an article on the true statistics of the Success rate of first Pituitary surgeries. Getting the word out is my main goal, but I would like to see it printed accurately. Thank you for your time on this issue and please do some research, you might find that it would be a great article to print. I know of many other Cushing’s patients including myself that would love to be a part of this, you can call me and ask questions or find tons of accurate information at cushings-help.com, founder Mary O’Conner, whom has won several awards for her website. One of which was Forbes Magazine, Best of the Web.

Thank you,



MaryO'Note:  I was first interested in Cushing's thanks to a blurb on LHJ which listed a few smptoms and said in part  "If you have these symptoms...ask your doctor about Cushing's". And so I did and did and did...

Maybe this article will help someone else get the help that they need.

Have an appointment with the doctor? Tips show what to ask

Good general info for anyone of any age, no matter what symptoms or disease you may have.


by John Beale

Good communication between patients and their health-care practitioners is essential for good care. To help older adults better communicate with their health-care providers, the American Geriatrics Society's Foundation for Health in Aging has released a new, easily understandable tip sheet.


The tip sheet, "How to Talk to Your Healthcare Practitioner: Tips on Improving Patient-Practitioner Communication," outlines steps older adults and their caregivers can take before, during and after a visit to a practitioner. These steps help ensure practitioners, older patients and their caregivers get the information they need. The tip sheet is available online at: http://www.healthinaging.org/public_education/communication_tips.php.


Before visiting a health-care provider, the tip sheet advises older people to, among other things, make a list of any symptoms or health problems they have, as well as past health problems, any treatments they've undergone and any adverse reactions to treatments they have had.


Bring medications

It also encourages older adults to put the medications, supplements and other remedies they're taking in a bag and bring it to their appointment. That way, their practitioner can see what they're taking and at what doses - important information, since medications may interact and some may affect medical test results.


The tip sheet also advises older adults who don't speak English as a first language to consider looking for a practitioner who speaks their native tongue, bring along a bilingual buddy to translate or call the office and request a translator ahead of time.


The tip sheet encourages older patients and their caregivers to answer all questions frankly, to request explanations when needed and to ask follow-up questions, such as "Are there any risks associated with this treatment?" and "Are there any alternative treatments?"


Understanding is vital

It also suggests patients and caregivers repeat back what their providers tell them about their health and treatments to ensure they've understood correctly.


After an appointment, the tip sheet advises older patients to contact their practitioner's office if they don't feel better, if they have an adverse reaction to a medication or other treatment or if they realize they've forgotten to mention something important that's relevant to their health.


Other easy-to-read health tip sheets for older adults and their caregivers cover such topics as cold and immunizations, falls prevention, emergency planning, and joint replacement surgery for older people.


Anyone who does not have online capability may call the Office for the Aging at 845-486-2555 for tip sheet copies.


From http://www.poughkeepsiejournal.com/article/20090629/COLUMNISTS06/906290301/1005/LIFE


How to Talk to Your Healthcare Practitioner: Tips on Improving Patient-Practitioner Communication

The list mentioned in the article from http://www.healthinaging.org/public_education/communication_tips.php


Good communication between you and your healthcare practitioners -- the physicians, nurse practitioners, nurses, physician assistants and other healthcare professionals you see -- is essential to good care.


It's important that you give your practitioner the information about yourself and your health that he or she needs to provide quality care. And it's important that he or she explain what you need to do to stay as healthy as possible, in a way that you understand.


Here's what experts with the American Geriatrics Society's Foundation for Health in Aging (FHA), suggest:


Before your appointment

Make a list Visiting a healthcare professional can be stressful -- particularly if you're not feeling well -- and stress can make it harder to remember what you need to tell and ask your practitioner. So make a list and bring it to your appointment. Write down any health problems you have had or do have, and any surgery or other treatments you've undergone. Write down the names of any medications you've taken that have caused unpleasant or dangerous side effects. If you're sick, write down all of your symptoms.


And don't forget to write down any questions about your health that you might have. You can find comprehensive lists of questions that older adults should consider asking their healthcare practitioners - organized by subject - on "Aging in the Know" (www.healthinaging.org/agingintheknow/questions_trial.asp), the FHA's free senior health website.


Bring your medications, vitamins, and other remedies to your appointment Before leaving for your visit, put all of the prescription drugs, over-the-counter medications, herbs, vitamins, and other supplements you take in a bag. Take them with you and show them to your healthcare practitioner. This way, he or she will know exactly what you're taking, when, and at what doses. This is important because some drugs, herbs and supplements can interact with medications your practitioner might prescribe. They might also affect the results of certain medical tests.


Pack paper Bring paper or a notebook to your appointment so you can write down what your healthcare professional tells you. If you have trouble remembering later on, you can look at your notes.


Consider asking a buddy along A family member or close friend who goes with you when you see your healthcare professional can offer your practitioner information that you might forget or overlook. He or she can also help you remember what your healthcare practitioner says. If you want to discuss something with your practitioner alone, you can always ask your relative or friend to leave the room while you do so.


Call ahead to request a translator if necessary If English is not your first language, you might seek out a healthcare practitioner who speaks your native language. Other options include bringing a bilingual buddy with you to your appointment, or calling your practitioner's office ahead of time and asking if staff can supply a translator.


During your appointment

Answer questions honestly It's essential that you answer all of the questions your healthcare practitioner asks you, even if he or she asks about topics that might make you uncomfortable, such as mental health problems, drinking, and sex. There's nothing to be embarrassed about. Your practitioner needs complete information to provide proper care. And everything you tell him or her is confidential.


Ask questions If you don't understand what your healthcare professional tells you during your visit, ask him or her to explain it. You need to -- and have a right to -- understand what your practitioner says. It's particularly important that you understand any treatments he or she recommends. You should ask if there are any risks associated with treatments, and if there are any alternatives.


Mention any cultural or religious traditions that might affect your care If your healthcare practitioner recommends that you eat foods that your religion prohibits, for example, or if you need to fast at certain time of the year, tell him or her.


Repeat back After your healthcare professional explains what you should do to stay healthy, or to treat a health problem, repeat this back to him or her using your own words. You might start by saying, "So, you're telling me that I should…." If you've misunderstood his or her advice, your practitioner will realize this, and clarify.


Ask for written instructions If your healthcare practitioner puts his or her advice in writing, you can refer to the written instructions at any time.


After your appointment

Call your practitioner's office if you don't feel better, have a bad reaction to medications, or realize you forgot to mention something If you don't feel better after your visit, or seem to be having a bad reaction to medication your healthcare professional prescribed, call his or her office immediately. You should also call if you realize, after leaving the office, that you neglected to ask a question or provide information about your health, or didn't understand what your healthcare practitioner said. Ask to speak with your practitioner as soon as he or she is available or ask to speak to another healthcare professional in the office who can help you.


Communication between you and your healthcare practitioner is an ongoing process. The simple tips above can help improve communication. Improved communication means better understanding, diagnosis and treatment.

Tuesday, June 23, 2009

Persistent Body Fat Mass And Inflammatory Marker Increases After Long-Term Cure Of Cushing's Syndrome

Journal of Clinical Endocrinology & Metabolism , doi:10.1210/jc.2009-0766

María-José Barahona*, Nuria Sucunza, Eugenia Resmini, José-Manuel Fernández-Real, Wifredo Ricart, José-María Moreno-Navarrete, Teresa Puig, Jordi Farrerons,  and Susan M. Webb

Endocrinology and Medicine Departments and Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBER-ER, Unidad 747), ISCIII, Barcelona, Hospital Sant Pau, Universitat Autònoma de Barcelona; Endocrinology Department, Institut d'Investigació Biomèdica de Girona (IDIBGI) and CIBER Fisiopatologia de la Obesidad y Nutrición CB06/03/010; Hospital Josep Trueta, Girona; Epidemiology and Internal Medicine Departments, Hospital Sant Pau, Universitat Autònoma de Barcelona, Spain

* To whom correspondence should be addressed. E-mail: 33962mbc@comb.cat.

Objective: Although increased central fat mass is characteristic of active Cushing's syndrome (CS), little is known on body composition and secretion of adipokines after long-term recovery of CS. The aim was to evaluate central fat mass and its correlation with adipokines and cardiovascular risk factors in patients after long-term remission of CS.

Methods: Thirty-seven women with CS in remission (27 of pituitary and 10 of adrenal origin, mean age: 50 ± 14 years, mean time of hormonal cure: 11 ± 6 years) were enrolled and compared to 14 with active CS and 85 gender, age and BMI-matched healthy controls. Total and trunk fat mass were measured by dual-energy x-ray absorptiometry scanning. Laboratory parameters and adipokine levels [including adiponectin, visfatin, soluble TNF{alpha}-receptor 1 (sTNF-R1), sTNF-R2 and IL-6] were measured.

Results: Cured CS patients had more total and trunk fat mass than controls. Cured and active CS had higher levels of sTNF-R1 and IL-6, and lower adiponectin levels than controls. Higher insulin levels and blood pressure in both groups of CS patients and higher apoprotein B in cured CS were observed compared to controls. sTNF-R1 correlated positively with percentage of trunk fat mass, and remained significant after adjusting for anthropometric parameters.

Conclusion: Despite long-term cure, patients who have suffered CS exhibit persistent accumulation of central fat, as in active hypercortisolemia, with the consequent unfavourable adipokine profile, leading to a state of low-grade inflammation. This situation determines a persistent and increased cardiovascular risk in these patients.

Key words: Cushing's syndrome • fat mass • inflammation


Monday, June 22, 2009

Finally caught up! 1 updated and 5 new Cushing's bios added. dx include 2 adrenal, 3 pituitary, 1 undiagnosed http://ping.fm/m1tM6
Cushing's locations updated, 5 new people added. http://ping.fm/6Lrv8
5 new Cushing's bios added. dx include 2 adrenal, 1 pituitary and 2 undiagnosed http://ping.fm/SAVCX

Diabetes Insipidus Following Transsphenoidal Pituitary Adenomectomy

Background: Transsphenoidal pituitary adenomectomy initiated from 1907 (Schloffer).  At that time, because of poor lighting, deep operative site, poor unfolding, difficult hemostasis, incidental leakage of cerebrospinal fluid and hard controlling intracranial infection, for a long time, the approach had not been used widely. 

Till 1960's, Hardy used operating microscope for transsphenoidal pituitary adenomectomy.  By dint of its magnification and lighting advantages, operating unfolding took on a new look. 

From 1970's, along with the development of image diagnostics and radioimmunity-endocrine diagnostics, early diagnosis even supraearly diagnosis of pituitary adenoma especially microadenoma became possible. 

Then pituitary adenomectomy was no longer satisfied with optic nerve decompression and so on, but trying radical cure of functional endocrine disorder.  Accompanying the improvement of operating microscope. microinstrument and X-ray registration device, transsphenoidal pituitary adenomectomy developed unprecedentedly.  The approach possesses the advantages of tiny damage, good operative effect, safety, time saving, low complication and low fatality. 

Now it is accepted by more and more neurosurgeons.  Besides strict mastering operating indication, well knowing relative opography, mastering operating technique, operator should deeply know possible complication and master preventive and curative measures, to lower the possibility of the operative complication and boost the operating effect as well as safety. 

Diabetes insipidus is one of the most frequent complications of transsphenoidal pituitary adenomectomy. 

Objective: 776 postoperative patients who underwent transsphenoidal microsurgery for pituitary adenoma were selected from Shandong Province Hospital. from 1999 to 2006.  Upon retrospective analysis on the clinical data, we want to analyze the correlative factors influencing the incidence of postoperative diabetes insipidus(DI).  Including the sex of the patient, the size of the adenoma, the type of the adenoma and the excision form of the operation. 

Material and methods:

1.  Material The clinical data of 776 postoperative patients from Shandong Province Hospital. from 1999 to 2006, who underwent transsphenoidal microsurgery for pituitary adenoma were retrospectively analyzed.  Including 352 male ones and 424 female ones.  14~72 years old.  Mean age was 36 ± 12 years old.  88 ones of microadenomas(diameter of the adenoma, 1cm), 492 ones of macroadenomas(1cm3cm).  326 PRL secreting adenomas, 154 GH secreting adenomas, 20 ACTH secreting adenomas, 203 nonfunctional adenomas, 71 mixed secreting adenomas and 2 TSH secreting adenomas.  582 ones of total resection and 194 ones of subtotal ectomy.  All the patients were given head CT or MRI exam before operation. 

2.  Methods All the patients were given transsphenoidal microsurgery for pituitary adenoma.  Gave urethral catheters before operation.  Gave fluid replacement by 2500~3000ml on the day after operation. 

After operation, recorded every hour's urine volume, and gave dynamic exam on electrolyte, urine specific gravity and blood. urine osmotic pressure.  Commonly believed, if postoperative urine specific gravity 4000ml/d or urine volume >200ml/h, urine osmotic pressure(Uosm)female.  Analyzed by SPSS software, x~2 = 30.  688, Pmacroadenomas>giant adenomas, x~2 = 20.  211, PPRL adenomas>GH adenomas>nonfunctional adenomas>mixed secreting adenomas>ACTH secreting adenomas, x~2 = 15.  599, Psubtotal ectomy, x~2 = 37.  885, Pfemale;

(2)In patients who underwent transsphenoidal microsurgery, the incidence of postoperative DI was closely correlated with the adenoma size: microadenomas> macroadenomas>giant adenomas;

(3)In patients who underwent transsphenoidal microsurgery, the incidence of postoperative DI was closely correlated with the adenoma type:TSH secreting adenomas>PRL secreting adenomas>GH secreting adenomas> nonfunctional adenomas>mixed secreting adenomas> ACTH secreting adenomas;

(4) In patients who underwent transsphenoidal microsurgery, the incidence of postoperative DI was closely correlated with the excision form of the operation: total resection> subtotal ectomy.


From http://www.scidatabase.com/html/200906/21/diabetes-insipidus-following-transsphenoidal-pituitary-adenomectomy.html

Long-Term Results Of Stereotactic Radiosurgery In Secretory Pituitary Adenomas

Frederic Castinetti, Mariko Nagai, Isabelle Morange, Henry Dufour, Philippe Caron, Philippe Chanson, Christine Cortet-Rudelli, Jean-Marc Kuhn, Bernard Conte-Devolx, Jean Regis,  and Thierry Brue*

Service d'Endocrinologie, diabète et maladies métaboliques, et Centre de reference des maladies rares d'origine hypophysaires DEFHY, Hôpital de la Timone, Marseille, France; Service de neurochirurgie fonctionnelle stereotaxique, Hôpital de la Timone, Marseille, France; Service de Neurochirurgie, Hôpital de la Timone, Marseille, France; Service d'Endocrinologie - Maladies métaboliques – Nutrition - CHU de Toulouse - Hôpital Larrey - Pôle Cardio-Vasculaire et Métabolique - 24 Chemin de Pouvourville TSA 30030 FR-31059 TOULOUSE CEDEX 9 France; Assistance Publique-Hôpitaux de Paris, Service d'Endocrinologie et des Maladies de la Reproduction, Hôpital de Bicêtre, Université Paris Sud 11, INSERM U693. F-94275 Le Kremlin-Bicêtre, France; Centre Hospitalier Universitaire de Lille, 58 Avenue de l'Amiral Courbet FR-59130 LAMBERSART France; Institut Fédératif de Recherches Multidisciplinaires sur les Peptides - INSERM U 413 - UA CNRS IFRMP 23- CHU de Rouen - 147 Avenue du Maréchal Juin - FR-76230 BOIS-GUILLAUME France

* To whom correspondence should be addressed. E-mail: thierry.brue@mail.ap-hm.fr.

Context: To date, no study reported long-term follow-up results of Gamma Knife stereotactic radiosurgery (SR).

Objective: To determine long-term efficacy and adverse effects of SR in secreting pituitary adenomas.

Design: Retrospective study of patients treated by SR in the center of Marseille, France, with a follow-up at least equal to 60 months.

Patients: 76 patients were treated by SR for acromegaly (n=43), Cushing's disease (CD, n=18) or prolactinoma (n=15), as a primary (n=27) or adjunctive post-surgical treatment (n=49).

Main Outcome Measures: After withdrawal of antisecretory drugs, patients were considered in remission if they had mean GH levels < 2 ng/ml and normal IGF1 (acromegaly), normal 24h urinary free cortisol and cortisol < 50 nmol/l after low dose dexamethasone test (CD), or 2 consecutive normal samplings of prolactin levels (prolactinoma).

Results: After a mean follow-up of 96 months, 44.7% of the patients were in remission. Mean time to remission was 42.6 months. Twelve patients presented late remission at least 48 months after SR. Two patients with CD presented late recurrence 72 and 96 months after SR. Forty percent of patients treated primarily with SR were in remission. Target volume and initial hormone levels were significant predictive factors of remission in univariate analysis. Radiation-induced hypopituitarism was observed in 23% patients; in half of them, hypopituitarism was observed after a mean time of 48 to 96 months. Twenty-four patients were followed more than 120 months: rates of remission and hypopituitarism were similar to the whole cohort.

Conclusions: SR is an effective and safe primary or adjunctive treatment in selected patients with secreting pituitary adenomas.

Key words: gamma knife • radiosurgery • stereotactic radiosurgery • radiotherapy • acromegaly • Cushing's disease • prolactinoma

From http://jcem.endojournals.org/cgi/content/abstract/jc.2008-2772v1

Sunday, June 21, 2009

Adrenal Cushing's: Father's Day tribute: A dad for only 53 days

No one heard anything. They only remember Jason Gray’s face.

He stood outside the glass partition at the OSF St. Mary Medical Center nursery in Galesburg the afternoon of March 23 watching nurses weigh and measure his newborn son, Zeke. Tears streamed down his cheeks as he snapped photos of the moment. His smile was endless.

“He was just smiling and crying,” his mother, Pat Gray, said. “He was just so excited, just tears running down his face.”

He was a dad for 53 days. This would have been the 29-year-old’s first Father’s Day.

“He always knew he wouldn’t get to raise him,” Pat Gray said.

* * *

Jason Gray never wanted to leave Galesburg.

The family’s move to Knoxville was only six miles. It might as well been a continent.

“He didn’t want to move to Knoxville,” his mother said. “He hated it. .... He was so mad at me for so long over that.”

The day before Christmas break in 1987, Chris Gray, then a senior at Galesburg High School, stopped by Silas Willard Elementary School to get his brother after school. Jason was transferring to Knoxville the next semester and was sobbing in the car.

“He was really upset and in tears,“ Chris said. “It really affected me quite a bit.”

Chris was eight years older, and the age gap created a natural barrier between the brothers. But after that day, their relationship changed.

“I tried to look after him closer,” said Chris, who finished his senior year at Galesburg. “He was leaving the school he had gone to and was leaving his friends.”

As it turned out, things were not so bad in Knoxville.

In a matter of weeks, Jason migrated to a group of boys in Knoxville his age. He loved his life there. From her house on Westview Drive, Pat would glance outside her windows and watch Jason spill every ounce of his energy playing with the neighborhood boys on an abandoned grass lot nearby.

“It was all the boys in our neighborhood,” she said. “I could look out my window and every day they were either playing baseball, basketball, football. Every day. Twenty-four-seven, those boys were out there.

* * *

Kati Lamb was the one. Pat Gray knew this deep in her bones.

“He was hooked on her,” Jason’s mother said. “He had dated a few before her, but this was it.”

At 16, Kati and Jason met while cruising the Galesburg strip down Henderson and Main streets one summer night. They had mutual friends dating and they soon fell into place.

They were opposites in many ways: Kati was a stellar student who would eventually study French and International Studies at Knox College, while Jason played the role of the jock who studied only out of necessity.

“She brought out the best in him. He was a smart guy but he didn’t like to study. If he liked the subject, he was very good at it. But if he didn’t, he wasn’t very motivated,” Chris said. “But she was a very good student and she had an excellent influence on him. There were questions whether he could get into college or not but he ended up going to (Carl Sandburg College and Western Illinois) and getting his degree in four years, faster than most of his friends.

“That was Kati’s influence on him.”

Jason rubbed off on Kati, too.

“She was a lot more serious and when they got together, she relaxed more and her sense of humor blossomed,” Chris said. “They were just a perfect match.”

Night after night, the couple hung out. “From the moment they met, they were inseparable almost to the point where the guys were like, ‘Where’s our best buddy?’” said Ryan Brown, a close high school friend. “They were head over heels for each other right away. They were madly in love and didn’t care who knew.”

* * *

Jason was a three-sport athlete at Knoxville. He was best in football, he loved basketball the most and the one he actually played in community college at Carl Sandburg was baseball.

“It was sort of a strange combination of things,” Chris said.

“He wasn’t always concerned about wins and losses. He just had fun. He worked hard and wasn’t the star of the team, but he loved being part of a team,” Chris said.

That’s the way Brown remembered him.

Their senior year in 1998, Jason was the starting first baseman for Knoxville. In one game, an opponent lofted a ball toward the foul line, which was set off by an orange, temporary snow fence. Jason gave chase and crashed through the flimsy plastic barrier.

Everyone could see Jason on the ground — and baseball on the ground near him. But he scrambled to scoop the ball in his glove and he popped up, coolly showing it off in the webbing.

“He obviously didn’t catch the ball but he jumped up like he caught it,” Brown said, chuckling at the thought 11 years later.

His teammates and the crowd burst into laughter. So did the ump.

“He was probably the most fun guy I ever knew,” said Brown, now the boys basketball coach at Annawan.

* * *

The setting for the big question was a hotel in Muscatine, Iowa.

In April 2002, Jason called Canterbury FantaSuites. The hotel was well-known for its theme rooms and Jason wondered if an Africa room existed there. Kati had spent a summer on the continent as a student at Knox and the memory was dear to her.

No, the staff told him. But they did have a jungle room.

Good enough, he figured. But upon arrival, they walked into a gaudy room with a zebra head jutting out of the wall above the bed.

“We had to sleep at the other end of the bed because it was too weird,” Kati said.
It didn’t stop her from accepting his proposal.

* * *

On June 7, 2003, the couple was married in a picture-perfect ceremony at the gazebo in Lincoln Park in Galesburg, in front of a massive group of friends and family.

The reception at the Galesburg American Legion was Hawaiian-themed, at the request of the groom. He wanted the guests wearing flip-flops and island shirts, not stuffy dress clothes.

“He was so laid back, all the time,” Kati said.

* * *

Jason’s body soon began acting strangely. He bloated with water weight. His blood pressure elevated to hugely abnormal levels. His bone mass deteriorated.

On Nov. 26, 2004, the news came. He had tumors on his liver and pancreas. Kati remembers the date easily. It was her 25th birthday.

Two months later he was diagnosed with neuroendocrine tumors, exceedingly rare for a person younger than 60. The tumors caused him to have Cushing’s syndrome and the disorder exposed him to high levels of the hormone cortisol, explaining his symptoms.

“Anything bad that could happen, happens with that,” Kati said.

The couple began going to the Mayo Clinic in Rochester, Minn. In April 2004, he learned the tumors existed on both ends of his liver. Surgery was not an option.

He was dying.

“There wasn’t anything they could do,” Kati said.

* * *

In January 2006, doctors removed his adrenal glands to stop the swings in water weight and other symptoms. The day after the surgery, his weight plummeted. Jason’s muscles had atrophied to the point where he could not move on his own power. He was miserable.

But his humor was undiminished.

“Can you weigh me? I’m curious because I think I lost a lot of weight,” Jason asked the Mayo Clinic staff.

He was down more than 100 pounds — in one day.

“Hey,” Jason said, “I lost an Olsen twin.”

* * *

With Jason sick, the couple tried to get pregnant through in vitro fertilization.

In July, they learned that Kati was pregnant but their enthusiasm was tempered. It was one year after another pregnancy had miscarried, and they told only close friends and family of this latest attempt.

“When we found out it worked, we were hesitantly excited because it worked one other time before and we lost it,” Kati said.

The threshold after which couples could feel safe was generally regarded as 16 weeks. In October, their fears were allayed. The date had passed.

“It better be a boy,” Jason told Kati.

A month later Kati had an ultrasound with Jason at her side. It was Nov. 26, another of Kati’s birthdays spent in the hospital.

“I don’t give numbers,” the sinographer told the couple. “I don’t give guarantees, but I think it’s a boy.”

“How sure?” Jason asked.

“I just said I don’t give numbers,” she said.

“But if you were going to ...”

“But I don’t.”

“So we’re talking like 80 percent?” Jason said.

“Look,” the sinographer said, showing Jason the pictures on the ultrasound.

Boy parts.

“Oh,” Jason said, “OK.”

Later that day, Jason looked over at Kati.

“At least it’s good news on your birthday,” he said.

* * *

Before his diagnosis, Jason started coaching. He helped out at his old high school by working with the sophomore boys basketball team. He was a natural with kids.

After he turned ill, coaching became his haven. Many people questioned him about using the time he had left coaching, but the job meant three hours daily for five months where his mind was filled with basketball minutiae.

In those final years, the couple lived as normally as possible.

Jason continued to work at Sears in the Sandburg Mall and mix in some hours as a substitute teacher with the Knoxville School District. He was obviously sick. His skin was ashy, the deterioration of his once-stout body striking. But he rarely talked of his problems.

“He didn’t want the pity. He wanted to just live his life best he could,” Pat Gray said.

Jason stayed at Knoxville for five years, but he missed most of 2006 as he received treatment at the Mayo Clinic. In spring 2008, the head boys basketball job opened up. Jason threw his name in. But the School Board instead hired Mark Simpson,  who played at AlWood High School the late 1990s.

But Jason wouldn’t be out of the game long.

* * *

Mike Reynolds was hired to revive the Galesburg boys basketball program that same spring and was looking for qualified volunteers to help on his staff.

In September, Reynolds contacted Jason about meeting with him and sophomore coach Ryan Hart for an interview. Jason was unsure. He would be a late addition and was an out-of-towner.

At least since the third grade.

“He went to Knoxville. He graduated from Knoxville. He coached at Knoxville. He was used to Knoxville,” Kati said. “He was all worried.”

After the short meeting, Reynolds hired Jason as a volunteer sophomore assistant on Sept. 25.

“You could tell he was comfortable talking about the game,” Reynolds said. “You could see he had a lot of experience because he had a comfort level in being able to talk about the game.”

* * *

Kati understood Jason’s desire to coach. But she had one condition.

Kati demanded that Jason inform at least one of the coaching staff members that he was sick.

She traveled to most of the games, but if she missed one, a coach needed to know about Jason in case he passed out. Without his adrenal glands, his body lacked the natural jumper-cables needed to restart. A shot was necessary to revive him or he would be dead in a matter of minutes.

One day, Jason told Kati he had told Hart.

And what did he say, Kati asked.

“That’s crazy,” Jason said. It sounded like something Hart would say.

But that wasn’t the truth. He never told Hart — or anyone else.

He died months later not knowing the Silver Streaks coaching staff had become aware of his health issues through the grapevine. But the other coaches just figured if Jason didn’t want to talk about it, neither should they.

“We were just like, ‘If he doesn’t want to tell us, we’re not going to pry,’” Hart said.

* * *

After Jason arrived, few of the sophomores wanted to ride with Hart to games. The coaches took two vehicles on the road, Hart driving one and Jason handling the other. Jason was the preferred choice.

“The kids loved him,” Hart said.

Jason’s humor and passion made him a favorite. As an assistant, he was allowed to play the role of the good guy. He was a natural. He was the coach who cut through the seriousness and lent his ears to venting teens.

“Even if things went bad, he would have a joke,” said incoming Galesburg junior Andrew Steck, whose grandmother worked with Jason at Sears. “If somebody made a bad play or funny play, he would have a joke.”

For a man at first worried about connecting with those in the program, Jason grew incredibly close to the players and coaches in his six months there.

“I really appreciated what the Galesburg coaching staff did for Jason. He loved to coach. When I heard Coach Reynolds was going to have him help out, I thought that was a perfect scenario,” Chris Gray said. “I could not tell those guys enough how much I appreciate them giving him that opportunity. He had a great experience.”

* * *

Jason was sitting at home when the call came.

A Caesarean section was scheduled for that Friday but Kati awoke the Monday before with cramps. Hours later at work, her water broke. The baby was coming early. He had prepared for years for that day, but Jason freaked out.

“We almost had to stop by the mall for him to throw up,” Kati said. “He was so nervous.”

But his nerves calmed. At St. Mary Medical Center, he looked after Kati. Was she comfortable? Did she need anything? Did he need to talk to the doctors?

At 1:42 p.m. on March 23, their baby boy was born. They named him Zeke, a name the couple agreed “was somewhat normal and not too crazy,” Kati said. He weighed a shade under seven pounds.

“He came early,” Kati said. “He didn’t want to wait.”

They hadn’t much time left.

* * *

Six weeks later at St. Mary Medical Center, Jason hadn’t slept or eaten in days. By then, the right side of his diaphragm was paralyzed and he could barely breathe. He needed an oxygen tank, cranked to its highest output. Walking a few feet was an exhausting chore.

His insides ached and he flopped constantly in bed. Pat Gray would place a pillow between his legs, but the comfort was fleeting. In a matter of minutes, he would toss and turn again.

“It was just constant,” Pat said of the pain.

In the evening of May 14, Kati brought Zeke to visit his father. Jason saw his son for an hour before he became too tired.

“Go ahead and take him home,” Jason told Kati.

“Would you like me to come back and stay with you?” Kati asked.


* * *

Jason Gray died five minutes before midnight on May 14, with Kati and Chris at his bedside.

The next morning, Hart awoke to several text messages on his phone. He guessed the bad news. Reynolds received a phone call from Kati after second period at Galesburg High School ended. Reynolds scheduled a team meeting in the boys locker room to break the news. A counselor was there with the team members, many of whom never even knew Jason was dying.

“That was something they needed to be told by me and not the newspaper. It was good for them to hear it from somebody who’s familiar,” Reynolds said. “It was a rough day. It was hard because you have to try to put on a strong face because you lead the program, but it hit pretty close to home for us.”

After telling the team, he pulled Steck off to the side. He was one of the players closest to Jason.

“When Coach Reynolds told us, I knew I had lost a good friend,” Steck said.

A month after Jason’s death, Reynolds has started working on early plans for a memorial dinner. Nothing’s official yet, but Reynolds wants to hold the event before the first Western Big 6 conference game next season.

“We just want his legacy and his dedication to our program to not go unnoticed,” Reynolds said.

* * *

In the Knoxville house the couple once occupied together, Kati has a letter Jason wrote to Zeke stored away. In it, Jason talks to the son he knew for seven weeks.

“He’ll have that when he gets a little older,” Kati said.

Zeke lay in her lap, cooing, as Kati recalled Jason’s life last week in that house.

“I don’t have time to think a lot about it. The baby requires all your attention,” said Kati, 29.

She paused.

“But he looks just like him. He looks just like him. It definitely has kept my mind off it. I don’t have time to sit there and stew. I have the baby. He has helped all of us.”

In Zeke, a piece of Jason lives on.

“Thank God for that little baby,” Chris Gray said. “It’s a part of Jason. We can watch him grow. It’s a memento that he left us . . . something for us to remember him.”


From http://www.galesburg.com/sports/x998778920/JASON-GRAY-LIVING-LEGACY

New Cushing's Helpful Doctor added in Texas http://ping.fm/myMVU
1 new and 2 updated Cushing's bios added. 1 pituitary, 2 undiagnosed http://ping.fm/BG52j

Saturday, June 20, 2009

Our own Robin Submitted this Abstract

Robin (staticnrg) submitted an abstract to Medicine 2.0Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.

This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).

An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.

This year's conference will be held in Toronto, Canada and will be attended by

  • Academics (health professionals, social scientists, computer scientists, engineers)
  • Software and Web 2.0 application developers
  • Consultants, vendors, venture capitalists, business leaders, CIOs
  • End-users (health professionals, consumers, payors)


Robin's abstract was submitted and accepted!  WooHoo!

'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'

An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.

One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.

On the Message Boards

The difficulties of Cushing’s syndrome

(An Oldie but Goodie!)

Diagnosing and treating Cushing’s syndrome is sometimes just as difficult as it was 70 years ago.

For as long as it has been described, Cushing’s syndrome has presented physicians with a problem. Harvey Cushing first described it in 1932, and the diagnosis, differential diagnosis and treatment of Cushing’s have remained a major challenge for endocrinologists ever since.

Though uncommon, it is difficult to consider Cushing’s syndrome a rare occurrence. New research has shown Cushing’s syndrome to have a substantially higher prevalence than previously thought. Unexpected endogenous hypercortisolism may occur in 0.5% to 1% of patients with hypertension, 2% to 3% with poorly controlled diabetes, 6% to 9% with incidental adrenal masses and 11% with osteoporosis and vertebral fractures.

“We are gaining an appreciation that Cushing’s is more common than it was once believed to be,” said Mary Ruppe, MD, endocrinologist at the University of Texas Health Science Center at Houston, and program committee chair of the Women in Endocrinology organization. “This fact points to the need for data regarding the value of the different diagnostic approaches and for data regarding treatment/outcomes in populations with Cushing’s.”

As most of the characteristics of Cushing’s are common in the general population, including obesity, depression and hypertension, it is extremely difficult for endocrinologists to decide on who should be screened for the disorder. A recent clinical review by Hershel Raff, PhD, and James W. Findling, MD, noted that as the number of patients in these high-risk groups continues to increase, the need for a sensitive and specific diagnostic test for Cushing’s syndrome has become paramount.

The three most commonly performed diagnostic studies for Cushing’s syndrome — urine-free cortisol, low-dose dexamethasone suppression test and the nocturnal salivary cortisol — are also not without hurdles. All three have been shown to produce false positives and false negatives.

Approximately 80% of patients with Cushing’s syndrome have an adrenocorticotropic-secreting neoplasm from a pituitary tumor (Cushing’s disease) or a nonpituitary neoplasm, and the treatment of Cushing’s disease remains challenging for both endocrinologists and neurosurgeons as well. Transsphenoidal surgery is currently the standard treatment of choice in patients, but achieving surgical remission has been difficult as well.

“Cushing’s syndrome is a very rare but important diagnosis for the patient and endocrinologist. Confirming the diagnosis may be challenging, and before embarking on a costly set of tests, the endocrinologist should be reasonably assured that the patient indeed requires diagnostic exclusion by rigorous screening methods,” said Shlomo Melmed, MD, senior vice president of Academic Affairs at Cedars Sinai Medical Center, Los Angeles, and an Endocrine Today editorial board member.

With more than 7.5 decades of research since Dr. Cushing’s discovery, what are the best methods of diagnosis and treatment for Cushing’s syndrome? Endocrine Today talked with leading researchers in the field to uncover the current trends in Cushing’s syndrome treatment.

Screening process

Laurence Katznelson, MD, associate professor of medicine and neurosurgery at Stanford University, and medical director of the pituitary program at Stanford Hospital and Clinics, explained to Endocrine Today the difficulty of deciding who should be screened for Cushing’s syndrome. For instance, although the syndrome is associated with multiple comorbidities, including obesity, hypertension and depression, endocrinologists should be prepared to delve a little deeper into the symptoms to see if they warrant a screening test.

“The presence of Cushing’s syndrome should be considered if these medical conditions are present, though diagnostic testing should be performed only in subjects who have signs favoring Cushing’s, such as demonstration of objective proximal weakness, spontaneous ecchymoses and violaceous striae,” Katznelson said.

“For example, central obesity with supraclavicular and dorsicervical fat pads would favor a diagnosis of Cushing’s syndrome, in contrast to the presence of generalized obesity,” he said.

Raff and Findling noted in a recent clinical review that endogenous cortisol excess also leads to fairly specific catabolic effects — including the thinning of the skin with easy bruising, abdominal striae, poor wound healing, immune suppression, rib fractures, hirsutism in women, acne and muscle wasting leading to proximal muscle weakness.

“There is no clear guideline,” said Roberto Salvatori, MD, associate professor of medicine in the division of endocrinology at Johns Hopkins University School of Medicine. “You need to keep your mind open.”

“Sometimes Cushing’s is obvious. Sometimes, when it is mild, it may not be diagnosed for many years. One must screen a lot of patients to find one with Cushing’s. However, anytime a physician thinks about the possibility of a patient having the disease, work-up should be initiated,” he said.

Testing options

Opinions varied when Endocrine Today asked researchers which of the three tests for Cushing’s syndrome was most reliable.

“No test is 100% sensitive or specific,” Salvatori said. “I always use two, sometimes three, screening tests.” However, Salvatori noted he feels the night-time salivary cortisol test is the most reliable and easy to obtain.

Raff and Findling described the measurement of free cortisol in a 24-hour urine collection as being long considered the gold standard for the diagnosis of endogenous hypercortisolism. The test relies on the concept that as daily production of cortisol is increased, the free cortisol filtered and not reabsorbed or metabolized in the kidneys will be increased. They noted that current research has shown that many patients with mild Cushing’s syndrome do not have elevations of urine-free cortisol, “making it a poor screening test for this condition.”

The low-dose dexamethasone suppression test relies on the concept that the correct dose of dexamethasone will suppress ACTH, and cortisol will release in normal patients while patients with corticotroph adenomas will not suppress below a specified cut off. Raff and Findling noted that because of the significant variability of the biological behavior of corticotroph adenomas, research has shown that neither the overnight 1-mg dexamethasone suppression test nor the two-day low-dose dexamethasone suppression test appears to be reliable using the standard cutoffs for serum cortisol.

According to Raff and Findling, there is no diagnostic test used in the evaluation of Cushing’s syndrome that performs better than the late night/midnight salivary cortisol method. The concept is based on the fact that patients with mild Cushing’s syndrome fail to decrease cortisol secretion to its nadir at night. However, they still acknowledged that many factors, such as stress, sleep disturbances and psycho-neuroendocrine may falsely elevate nocturnal cortisol secretion.

“Because each of these tests has associated false positives and negatives, a combination of these tests is often necessary for a valid diagnosis,” Katznelson said. “In the end, these tests need to be considered in the context of a history and physical examination that favors this diagnosis.”

Lynette Nieman, MD, associate director of the Intramural Endocrinology Training Program at the NIH, agreed. “Of the three recommended tests, each is useful in certain conditions,” she said. “I try to stress that the testing should be individualized since some tests are likely to be falsely positive in some situations, eg, a woman on birth control pills is likely to have a high corticosteriod-binding globulin, which might elevate serum cortisol.”

Ruppe said the choice between the tests should be based on patient characteristics that will allow for adequate collection of each sample. “For instance, the use of a late-night salivary cortisol measurement would be suboptimal in an individual who works the third shift and may not have an intact circadian rhythm, or the choice of a 24-hour urinary free cortisol may be suboptimal in an individual with urinary frequency or urinary incontinence.”

Ruppe also noted that one possible improvement would be to improve standardization of the assays across different labs. “Since there is no standardization, the quality of the performance of the assay can vary across different facilities and centers,” she said.

Petrosol sinus sampling

Another controversial topic in the field is whether or not the inferior petrosol sinus should be sampled for an ACTH gradient to distinguish between Cushing’s disease and occult ectopic ACTH syndrome.

The invasive procedure has proven to be relatively safe when performed by experienced radiologists, but not all medical centers have the capability.
A woman with mild hypercortisolism, a normal or slightly elevated plasma ACTH and normokalemia has an approximately 95% likelihood of having Cushing’s disease before any differential diagnostic testing is performed, according to Raff and Findling. In contrast, a male patient with prodigious hypercortisolism of rapid onset, hypokalemia and marked elevations of plasma ACTH may be more likely to have an occult ectopic ACTH-secreting tumor.

About half of patients with ACTH-secreting microadenomas are estimated to have a normal pituitary MRI. In such situations, it is important to perform further testing, particularly an inferior petrosal sinus catheterization, to discern the presence of an ectopic ACTH-producing lesion, according to Katznelson.
“Some people would say that every patient should have it because it is the one best test for the differential diagnosis of ACTH-dependent Cushing’s syndrome,” Nieman said. “However, patients in whom data strongly suggest Cushing’s disease might forego it.”

“In a young woman with an MRI with a definitive adenoma and high-dose dexamethasone test showing less than 60% suppression, it is reasonable to proceed with surgery,” Salvatori said. “But even the International Prostate Symptom Score is not 100% sensitive or specific.” Raff said that he disagrees with the high-dose dexamethasone test.

Transsphenoidal surgery

Currently, transsphenoidal surgery is the primary treatment of Cushing’s disease associated with an ACTH-secreting pituitary tumor. According to recent studies, remission rates after transsphenoidal pituitary microsurgery range from 42% to 86%.

Raff told Endocrine Today that the most important treatment recommendation that an endocrinologist makes to a patient with Cushing’s disease is referral to a neurosurgeon with extensive experience.

“Referral to a neurosurgeon who is highly experienced in this procedure is critical,” Katznelson agreed. He noted that there have been studies demonstrating that both the degree of tumor bulk resection and rates of biochemical remission are increased for all types of pituitary tumors when the surgery is performed by a neurosurgeon with extensive experience in endonasal pituitary surgery.

“In Cushing’s disease, this is especially true,” Katznelson said. “Because the tumors in this disorder are often small, if not microscopic, the surgical strategy may require dissection through the gland. In inexperienced hands, this may result in higher rates of hypopituitarism and lower rates of biochemical cure,” Katznelson said.

“There is no doubt that the surgeon’s experience influences the success rate,” Nieman said.

Constantine Stratakis, MD, with the National Institute of Child Health and Human Development, said he agreed, and stressed the importance of confirmation of diagnosis of Cushing’s syndrome prior to a referral to a neurosurgeon.

“There is nothing worse than an inexperienced surgeon operating on a patient with Cushing’s or a surgeon operating on a patient who does not have a firm diagnosis of Cushing’s syndrome,” Stratakis said.

“Surgery offers a reasonable chance for cure in the hands of an experienced neurosurgeon,” said Amir Hamrahian, MD, a staff physician at the Endocrinology Institute at the Cleveland Clinic. “We are currently involved in two studies looking at new medications for medical treatment of patients with Cushing’s syndrome. However, surgery is still the best initial approach for those not cured,” Hamrahian said.

The future

“Medications are the future for patients with inoperable, recurrent Cushing’s syndrome,” Stratakis said, referring to pasireotide (SOM230), a somatostatin analog.

He was part of a study in 2006 examining the in vitro effects of SOM230 on cell proliferation in human corticotroph tumors. Researchers found SOM230 significantly suppressed cell proliferation and ACTH secretion in primary cultures of human corticotroph tumors. They concluded that SOM230 may have a role in the medical therapy of Cushing’s disease. Raff said he believes that clinical trials in patients with Cushing’s disease who used SOM230 were not particularly successful. Anne Klibanski, MD, director of the neuroendocrine clinical center at Massachusetts General Hospital and primary investigator of the study, commented that in vitro studies play a critical role in assessing novel targeted pituitary tumor therapies. It is only in rigorous clinical trials that the overall efficacy and risks of such therapies can be established, she suggested.

“Microsurgical improvements will also be significant, but the major problem right now is the number of patients who are left untreated with recurrent disease,” Stratakis said. “For them, there are very few options other than irradiation, so innovative medical treatments with molecularly designed compounds or targeted to specific receptors and/or functions of the pituitary are the most important advances that I see coming in the near future,” Stratakis said.

According to James Liu, MD, assistant professor of neurologic surgery at Northwestern University Feinberg School of Medicine in Evanston, Ill., the future appears bright in the battle against Cushing’s.

“Technical advances in surgery including endoscopic pituitary surgery and pseudocapsular dissection can improve surgical outcomes,” Liu said.
Katznelson said he hopes the future will bring improved diagnostic strategies important for detecting true Cushing’s syndrome in the presence of multiple comorbidities. He noted that the ongoing research studies involving innovative medical therapeutic strategies that target the corticotroph adenoma itself, or block the effects of cortisol in the periphery, should bring new treatment options in the future.

“These studies will hopefully lead to novel medical options for this syndrome,” Katznelson said. “There have been significant advances in surgery, particularly with the development of minimally invasive, endoscopic surgery that has resulted in both improved biochemical outcomes and patient tolerability.” – by Angelo Milone

Discuss on the Message Boards

From http://www.endocrinetoday.com/view.aspx?rid=33057

Friday, June 19, 2009

Cushing's: Nothing gets her blood pressure down

Dear Dr. Donohue: I have had severe high blood pressure for many years. I have tried all the medicines you can think of. I am 62 and have had one ministroke. I used to weigh 235 pounds. I lost 100 pounds. I watch my salt. I have tried everything. Can you recommend anything?



Dear F.: Blood pressure that doesn't drop by making life changes (weight loss and diet) or by taking three or four blood pressure medicines is called resistant high blood pressure (hypertension). Your weight loss is admirable. It should have reduced your pressure. Watching your salt intake is also important. That entails more than not using the salt shaker. It requires you to carefully look for the salt content (listed as sodium or sodium chloride) of all your foods. Commercial soups, frozen dinners, many canned goods and luncheon meats often have a high salt content. Your diet should be one of fruits, vegetables, whole grains and one where meat and fats are eaten sparingly. Increase foods with lots of potassium in them: tomatoes, potatoes, prunes, lima beans, kidney beans, navy beans, bananas, oranges and orange juice, spinach, peaches, cantaloupe and broccoli. Potassium lowers blood pressure.

Exercise for 30 minutes every day. Get your doctor's approval first, and start out modestly.

For resistant high blood pressure, your doctor has to look for the less-common causes of it. Sleep apnea, adrenal gland tumors, Cushing's syndrome, narrowed kidney arteries and rare tumors such as pheochromocytoma are cases in point.

Some medicines raise pressure. Nonsteroidal anti-inflammatory drugs are an example -- Aleve, Advil, Motrin, aspirin and other NSAIDs. Don't drink more than two alcohol drinks a day.

A new medicine, one completely different from all other medicines, is now available. It is Tekturna. Something must be done for your pressure.

From http://www.detnews.com/article/20090619/OPINION03/906190396/Nothing-gets-her-blood-pressure-down

His kidney cancer symptoms were just like mine!

The only difference was my pain was in the front.  I have never in my life had such excruciating pain.  Mine came across suddenly.  Pain in afternoon, diagnosed with cancer in ER three hours later.  No pesky going from doctor to doctor, testing and more testing with this cancer.  Bang - instant diagnosis.

More info in this old post

I loved this quote at the end and need to remember it and quote it each day: “This is living with cancer. But you’re living.” 

My version will be “This is living with post-Cushing's, panhypopituitarisim, low growth hormone, low adrenal function and cancer. But you’re living.”

From http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1131

Reining in Renal Cancer


As new therapies stack up, controlling advanced kidney cancer is becoming a reality.


Tattooed in Chinese lettering over the former location of Marc Benner’s right kidney are the words “Kidney Cancer Survivor”—emblems of his year-and-a-half-long journey battling stage 4 renal cell carcinoma.

Benner, of Jackson, New Jersey, was 42 in 2007 when he began feeling excruciating pain in his back and noticed blood in his urine. “Like most guys, back then you couldn’t get me to the hospital,” he says. “I thought I was just passing a stone, to be honest.” In December that year, surgeons at Thomas Jefferson University Hospital in Philadelphia removed his kidney using minimally invasive robotic surgery. At the same time they excised a lung mass. He was back at work 10 days later.

But his battle was only beginning. His first set of scans in early 2008 showed masses in his liver and lung. That’s when his doctors prescribed Sutent (sunitinib), one of several relatively new drugs for advanced kidney cancer. Benner took Sutent for about a year, in cycles where he was on the drug for four weeks and off for two. Although he still has nodules in his lung—and a tumor just above his hip—the spots on his liver have disappeared. “I think it helped buy me time,” he says of the drug. And the self-described “gym rat”  has been lifting more weight than ever in his workouts.

When his cancer progressed on Sutent, he switched to Nexavar (sorafenib). “I’ve heard a lot of good things about Nexavar,” he says, three weeks after beginning the drug. Ultimately, he hopes that this drug, too, will buy him time until other treatments are available. “There’s some new stuff out there that might work better,” he says.

Benner is typical not just because his cancer is a type known as clear cell, which accounts for the vast majority of the almost 55,000 renal cancers diagnosed in the United States yearly, but also in his mix of hope for the future and anticipation of what’s coming next through the pharmaceutical pipeline.

Robert Figlin, MD, interim director of City of Hope Comprehensive Cancer Center in Duarte, California, and director of the center’s kidney cancer program, says that more treatments are available for metastatic renal cell carcinoma (RCC) than ever. In addition to the current arsenal of Sutent, Nexavar, and Torisel (temsirolimus), and the newly approved Afinitor (everolimus), all green-lighted by the Food and Drug Administration since December 2005, one additional product is likely to receive approval for kidney cancer this year—Avastin (bevacizumab). While they don’t promise a cure, collectively the five drugs have the potential to extend patients’ lives considerably.

Before the new agents came on the market, “there was no progress and few options,” says Robert Motzer, MD, who oversees the clinical trials program for advanced kidney cancer at Memorial Sloan-Kettering Cancer Center in New York City. “Now it’s changed dramatically. … You can see it in the faces of the patients.”

“This is a waterfall time for patients,” adds Figlin, who is also chair of medical oncology and therapeutics research at City of Hope. “The challenges for both doctors and patients are now how to choose the proper drugs, in what sequence, and whether or not to use them in combination.”

These new, so-called targeted, drugs vary in their mechanism of action in the body. Sutent, Nexavar, and Avastin disrupt a process known as angiogenesis—the formation of blood vessels that feed tumors. In a phase III trial to demonstrate Avastin’s potential benefit, a combination of the drug and an older treatment, interferon, nearly doubled the window of time in which patients’ metastatic RCC failed to progress, compared with placebo plus interferon.

Torisel and Afinitor are in a class of drugs called mTOR inhibitors, which means they target a cell protein that is part of a biochemical pathway implicated in the growth of tumor cells as well as blood vessels. While phase III trials have shown, for instance, that Sutent versus interferon can more than double the time before progression for many advanced kidney cancers, the mTOR inhibitors might be able to extend that period further.

In addition, Torisel, which is given intravenously weekly, has been studied in the treatment of patients with poor prognosis RCC—“those with the most symptoms, most extensive disease, who would otherwise have a short survival,” says Motzer. “It was the first of the targeted agents to show a survival benefit in that very poor prognosis population.” That population, he adds, accounts for up to one-quarter of people who are first diagnosed with metastatic kidney cancer.

The eagerly anticipated approval of Afinitor occurred in late March. That drug is administered orally, and updated results from a phase III trial examining people whose cancers had progressed on Sutent, Nexavar, or both found that Afinitor delayed the cancer’s progression by a median period of almost five months, compared with just less than two months in patients receiving a placebo. Afinitor also compared favorably to the other drugs in terms of quality of life and safety profile, with mouth ulcers and anemia among the side effects.

“The sense we have is that if a cancer cell builds up resistance to one medicine with one mechanism of action, switching over to another mechanism is attractive,” Motzer says.

A Chronic Disease?

Figlin says evidence most strongly supports using the new agents in sequence, with the antiangiogenic agents first, followed by an mTOR inhibitor if the cancer progresses. “That’s not to say other drugs can’t be interwoven, but the data are not as robust.”

Research into combinations of the targeted agents has, meanwhile, been disappointing. “Our early studies showed there seemed to be more toxicity in the combinations,” Motzer says. “So I’m more firmly behind the sequential use of these agents.”

The new drugs also appear beneficial for the approximately 20 percent of RCC patients whose tumors are not clear-cell type. While the benefits might not be as dramatic, “these targeted agents should still be used,” Figlin says.

For advanced clear-cell RCC, the medicines have made a dramatic difference in physicians’ conversations with patients. Figlin says he can tell newly diagnosed patients and their families that there’s a high chance of benefit from the treatment, with the potential to improve symptoms and extend life. “Although they are not curative treatments, they can turn this disease into more of a chronic management disease,” he says. “We were not able to have that conversation just five years ago.”

Coming down the pipeline are other promising new agents currently being tested in large phase III trials. “We are already embarking on next-generation drugs,” Figlin says, including the angiogenesis inhibitors pazopanib and axitinib, which have a mechanism of action similar to Sutent and Nexavar. “Both of these may have more activity than our currently available drugs.” They might also have a better side effect profile, he says. “That’s what we’re looking for—better tolerance and more effectiveness.”

The AXIS trial, a phase III study still recruiting patients, will test how axitinib measures up to Nexavar as second-line treatment for metastatic RCC. Results of the study are expected in mid-2010. Also going head-to-head in a phase III study are pazopanib and Sutent in locally advanced or metastatic RCC.

Experts agree there’s room to improve the targeting of known biochemical pathways related to kidney cancer as well as other pathways that may be important but aren’t as clearly understood.

The Old Kid on the Block

Before the targeted agents arrived on the scene, treatments known as biological or immune therapies, which enlist the body’s immune system to fight the cancer, were the standard of care. One such treatment, interferon, available since the 1980s, prompted a response in just a fraction of patients, and most would later see their disease progress. Interferon, Figlin notes, is the agent to which the new drugs have been compared in many of the clinical trials, but it no longer has much of a role as a treatment by itself.

Interleukin-2, or IL-2, an immune therapy on the market since 1992 but rarely used, has had checkered success. Administered to a small, sturdy subset of patients by experienced treatment teams in high (and very toxic) doses, IL-2, also referred to as Proleukin, has the potential to provide a cure in a very small number of patients—5 to 10 percent—with advanced RCC. Researchers, however, are still trying to figure out exactly how it works. “Unfortunately, with decades of experience, we still do not understand why some people benefit tremendously and some don’t benefit at all,” Figlin says.

Sue Guenther, 60, of Mesa, Arizona, has experienced high-dose IL-2 firsthand as part of a clinical trial in 2006. “I call it flu in a bag. It makes you sick as a dog,” says Guenther, who is also a survivor of thyroid cancer and sarcoma.

Like many people with kidney cancer, her malignancy was discovered by happenstance—a misstep on some marble stairs, she says, literally saved her life. Guenther stepped down hard, and subsequent pain in her right kidney sent her to the doctor for scans.

That was in 2004, when she underwent a radical nephrectomy at Northwestern Memorial Hospital in Chicago for a large, stage 3 tumor near her liver. By early 2006, doctors found a 9-millimeter metastatic tumor in her lung, reduced to 2 millimeters after combination therapy, including IL-2, in the clinical trial.

Michael Atkins, MD, deputy director of the division of hematology-oncology at Beth Israel Deaconess Medical Center in Boston, believes high-dose IL-2 should remain an important first-line therapy because it is the only one shown to even occasionally cause complete and lasting responses—but it may be rendered less effective and more toxic after treatments such as Sutent. He acknowledges the issue is controversial.

“My view is there is a select group of patients and tumors, yet to be completely defined, that are best initially treated with IL-2, with the antiangiogenic or targeted agents reserved for those patients whose disease fails to respond to IL-2,” says Atkins, who is also leader of the Kidney Cancer Program at Dana-Farber/Harvard Cancer Center and a professor of medicine at Harvard Medical School.

Although hard data are pending on factors that can predict responsiveness to IL-2, Atkins notes that researchers do have some idea of the clinical and biochemical characteristics that may mark patients most likely to benefit. The new therapies are a trade-off, he says. “While the new therapies help the average patient in a major way, without Proleukin, the cure of advanced kidney cancer is likely to become an even rarer event.”

Motzer, on the other hand, sees little role for IL-2, saying the current progress and excitement in the treatment of kidney cancer is based on the discovery and implementation of the targeted agents in the past five years.

The Ups and Downs

One disadvantage of the new drugs is a variety of toxic side effects. Another is price: They can cost tens of thousands of dollars a year. And the drugs require ongoing outpatient management, including monitoring for cardiovascular side effects in patients who received Sutent and/or Nexavar.

On Sutent, Benner had acid reflex, diarrhea, and fatigue, and had to drop his 50 mg daily dose to 37.5 mg. (Researchers are continuing to evaluate dosing strategies for the drug.) Everything, except chocolate, tasted like metal. On Nexavar, at an 800 mg daily dose, Benner developed a rash starting on his head and face, which moved to his chest and arms. “It almost was like second-degree burns,” he says, noting that his dose was reduced, then re-escalated. He takes special care of his feet, using ointments to avoid blisters that might arise from redness he has there. “I’m a pretty resilient person,” Benner says. “You can’t let a disease beat you.”

Guenther’s treatment odyssey, meanwhile, continued in 2007 and 2008, when she twice underwent cryoablation to treat tumors on her remaining kidney, which is functioning at about 70 percent. She, too, ended up on Sutent.

The first month, starting with a 50 mg daily dose that was later reduced to 37.5 mg, she found the fatigue devastating. The second month she also had a foul taste in her mouth and was living basically on just a few crackers a day. “I thought, ‘At least I’ll lose weight on Sutent,’ ” she says. But her doctor said no, people tend to gain weight on the drug. “It was then that I remembered God had a sense of humor.”

As of her last scans, her two major lung metastases were significantly reduced, and smaller lung spots were gone. “It looked like the Sutent was working,” she says. “This is living with cancer. But you’re living.”