Saturday, November 29, 2008

We're Getting Closer

The Cushings Help Organization is now an official Virginia Corporation.  WooHoo


Wednesday, November 26, 2008

The difficulties of Cushing’s syndrome


The difficulties of Cushing’s syndrome

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.

 How do you diagnose Cushing's syndrome?

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.

Shlomo Melmed, MD
Shlomo Melmed

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
Laurence Katznelson, MD, is Associate Professor of Medicine and Neurosurgery at Stanford University, and Medical Director of the Pituitary Program at Stanford Hospital and Clinics.

Photo by Norbert Von der Groeben

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.

Fast Facts: Issues at Hand

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, MDConstantine 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.

Amir Hamrahian, MD“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


Who should be tested for Cushing's syndrome and what is the best testing method?

For more information:

  • Aron DC, Raff H, Findling JW. Effectiveness vs. efficacy: the limited value in clinical practice of high-dose dexamethasone suppression testing in the differential diagnosis of ACTH-dependent Cushing’s syndrome. J Clin Endocrinol Metab. 1997:82;1780-1785.
  • Batista DL, Zhang X, Gejman R, et al. The effects of SOM230 on cell proliferation and ACTH secretion in human corticotroph pituitary adenomas. J Clin Endocrinol Metab.2006;91:4482-4488.
  • Carroll T, Raff H, Findling JW. Late-night salivary cortisol measurement in the diagnosis of Cushing’s syndrome. Nat Clin Pract Endocrinol Metab. 2008;4:344-350.
  • Findling JW, Raff H. Cushing’s syndrome: Important issues in diagnosis and management. J Clin Endocrinol Metab. 2006;91:3746-3753
  • Liu JK, Fleseriu M, Delashaw Jr. JB, et al. Treatment options for Cushing’s disease after unsuccessful transsphenoidal surgery. Neurosurg Focus. 2007;23:E8.
  • Nieman L. The dexamethasone-suppresssed corticotropin-releasing hormone test for the diagnosis of Cushing’s syndrome: What have we learned in 14 years? J Clin Endocrinol Metab. 2007;92:2876-2878.
  • Lad SP, Patil CG, Laws ER Jr, Katznelson L. The role of inferior petrosal sinus sampling in the diagnostic localization of Cushing’s disease. Neurosurg Focus. 2007:23:E2.g

Sunday, November 23, 2008

The Endocrine System


The endocrine system is comprised of endocrine glands and organs, which produce hormones. Hormones are substances or chemical messengers that affect many of the different processes that occurs in the body including:

  • normal growth and development
  • metabolism
  • sexual function
  • reproduction
  • mood
Endocrine glands are body structures that produce and secrete hormones exclusively. Major endocrine glands include the pituitary, thyroid, parathyroid, thymus, pineal, and adrenal glands.

Other organs of the body have cells that produce hormones but hormone production is not their only function. For example, the stomach, which has a major function in digestive processes but has cells that produce a hormone called gastrin. Other organs that have hormone-secreting cells include the pancreas, heart, small intestine, liver, testes, and the ovaries.

Diseases or disorders of the endocrine system occur when there is too much or too little hormone production. Disorders that results from too little or no production of hormone may include dwarfism, Addison's disease, hypoparathyroidism, and hypothyroidism.

Endocrine disorders caused by overproduction of hormones may include acromegaly, Cushing's syndrome, hyperparathyroidism, and Graves' disease, which is a form of hyperthyroidism.

Saturday, November 22, 2008

From last Spring: A repost...

I was talking online today with an old friend and Natalie's name came up.  It is so heart-wrenching when another Cushie dies :(

I still hate Cushing's.  It has taken away some of my best friends.

I am sitting here crying...I couldn't believe that our friend, Natalie Fay (Natalie65), died yesterday. She was only 42 and had recently had a BLA. I first met Natalie at a local lunch in November of 2001 and have seen her several times since then.

Natalie started the original "Dammit Dolls" that circulated around the country until people refused to pass them along anymore.

Dammit Doll.
Natalie also made counted cross-stitch Cushing's Awareness Pins:

Natalie's bio...

From 2001

From left: Joe (Natalie's husband), Natalie and Linda

Some recent past posts.

February 10, 2008
going to UVA I am going for my first visit with Dr. Hanks at UVA on the 20th. I will also see Dr. Vance that day. I haven't seen her before either. I am planning on having bilateral adrenal surgery in March. I am a little nervous about this, but it is going to be a positive thing I hope. I would love to hear from anyone who has had this done so that I will have an idea of what to expect. after surgery.
Thanks! Natalie

March 18, 2008
surgery update Hey everyone!
I'm back! It has been a very slow week and I'm just satrting to feel like moving around again. I had BLA on the 10th and came home on friday. My parents have taken my boys (3 & 6) home to Va. I have missed them so much this week, but I think it was the right thing to do. I don't know how I would have done it without them. I am still very sore and tired at times, but I'm coming along. Sorry this has taken so long to get out to you guys, I thought things were taken care of but I was wrong. Oh Well! I'm doing good and I'll keep in touch. Thanks for all of your thoughts and prayers.


pit surgery 1990
traditional 30 days radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004 still have remaining tumor
cortisol levels still off balance
BLA March 10, 2008

Funeral Services will be at Wright Funeral Home in Franklin, VA at 2pm on Friday the 25th. Graveside services will follow at Riverside Cemetary, Courtland, VA. Family visitation will be held Thursday the 24th at the residence of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, VA from 7pm to 9pm.

In lieu of flowers, donations will be accepted to Cushing's Help - Mary O'Connor, 4094 Majestic Lane #328, Fairfax, VA 22033.

Thank you for all your prayers.

Tuesday, November 18, 2008

Cushie Depression

Reprinted with permission from the Message Boards.

Honeybee says:

I went through my cushie folder and found this, a letter from my journal..

I was going through my folder, and I found a entry in my journal that brought me to tears and reminded me just how difficult it is living with this disease. This was before I had even heard of Cushings. My depression was very very bad. One of the very 1st things that I noticed that was gone after surgey was my depression..all these feelings were due to

"Since I have nobody to talk to, I am going to write, I talk to myself all the time, this way seems a little less nuts. I have decided to not fight anymore, not throw back anymore pills. I'm not going to go threw anymore dr. appts. I honestly do not see the use.


I don't feel wanted in this life, but I don't feel like God wants me in his heaven either. I'm so tired of asking why and getting no answer..why am I here? I have no purpose, here or anywhere. I am a waste, a total burden. Everyone I have ever loved does not at all care whether I live or die. It will probably be weeks if not months before anyone knows I am gone.

I just want to be understood a little bit, sometimes. I really do have feelings, I'm not mean, I want hugs and want to give hugs just like everyone else. I am not destined to be happy, here or anywhere. I have been a better person for a long time now but still I am always paying for my mistakes, it will never end.

I cry every single day. Mostly because I'm so scared, and alone. Alone even though I am married. Ive lost everything. My mother, father AGAIN and for the last time, my sister again , and also for the last time. My best friend Tara, who turns out I never really knew, even though I was my most true self in everyway. She said "you will miss me before I ever miss you" She was right, and that kills me. Ive lost my best friend and husband Tim. I don't know how, I don't know exactly where or when, all I know is he left me mentally, I lost my husband, my lover, my everything in him. He's gone. My marriage is ruined, over. I lost my children, my teenager, who is the only person in this entire world who might miss me, probably just because Ive known her so long. She has her own problems. E is determined to kill me I think. T must hate me , I understand why, I'm sorry for the pain I must cause him. Most of all I have lost myself. I am a wreck. Most days I try to hide it, some days I'm sure it shows, and those are the days I am unpredictable, sometimes I am angry, and I come off as being a nag or a b**ch. Other days I am sad, well most days I am sad. I cry alot more than I'd like to admit. I try to not wear mascara too much, so that nobody will know I have no hope left.

I used to find things funny even when stuff was bad. Not anymore. I lost my looks. I am gross, my hair has been falling out and turning gray from stress I suspect. I am always broke out, from stress I suspect. I am so ugly. I don't even look in the mirror anymore, because I cry. I am so fat. I weigh 200 lbs, I am so disgusting. That alone makes me want to kill myself. I have lost my health, terrible blood pressure, worse than anyone I have ever heard of. I take so many pills. My heart is probably really f***ed up, my kidneys hurt now too. I won't lie and say I'm not sraced, because I am terrified, just because of the unknown. I just don't want to feel like this anymore. I'm so lonely. I feel so unwanted. I feel like T doesn't want me. He just feels bad for me. I feel like he doesn't want to be home with me. I feel lke he is doing bad things when he is out. I can't compete with his job. He says he loves me, but I can't see it anymore.

I'm pathetic, I have nowhere to go, nobody will help me, so once again I'm stuck. Dependent should be my middle name. So I'm going to change everything. He and everyone else is off the hook now. I won't b**ch or nag to T  anymore about falling asleep on me, about all the stuff with his job. He always says "I don't go out with the guys like everyone else" which tells me he wants to. He can now. I won't say anything anymore. He can do anything he wants, he doesn't have to be held back by me anymore. I won't b**ch about how I don't feel good, I will keep all my pain and worry to myself. I'm not going to ask for anything anymore, it's all a me. I'm not going to take any of my pills, I just want to let God do what he needs to do with me. Things will be alot better for everyone to not have to deal with me. No more of "walking on eggshells". No more of my "issues".

Who did I wrong in my past life?? Must have been someone important because any and everything that could happen to a person has indeed happened to me. I just want to be happy for more than a few seconds. I wanted to love without fear and to be loved without judgement. Loyalty, understanding, contentment, faithfulness, truth, passion, fidelity..into eternity, all a dream for me, never my reality.

CT Scan, 2

Sheesh!  I drank all the barium like a good little girl and got to the hospital in plenty of time.  I filled out all the extra paperwork as requested.

Finally got back to the CT scan room.  ESL person asks why I'm supposed to be doing this with contrast.  I told her why my doctor, my specialist wanted this.  I wasn't doing it for fun.

She said, well, I've never had contrast before for CT scans.  I said that my doctor wanted it this time.

She said I'd had 4 CT scans for kidney stones since 2006, never had contrast.  I said I'd had 1 scan for kidney stones.  After that, they were all related to my kidney cancer.

She asked if I had my BUN/creatinine results.  I said that I didn't have that test done recently.  She said that since I was having iodine contrast they would need to be sure my kidney was functioning.

I said that my doctor had not ordered iodine contrast.  He knew I was allergic, it wasn't needed for this test, just the barium.

So, she went to talk to the radiologist who called my doctor who knew what he was doing when he wrote the order in the first place. 

I went back out and waited during this conversation.

She finally came back and said that my doctor didn't want the iodine contrast dye, just the barium because I had only one kidney.  Hello!  That was what I said in the first place but I'm just a patient and how could I know.

So, too much time had passed since I finished my barium at 11:30AM and I had to drink more.

The CT scan lasted for about 10 minutes after all that.

Monday, November 17, 2008

CT Scan Time

I'm sitting here drinking my berry smoothie barium, getting ready for a CT scan this afternoon of my abdomen and pelvis.

It's partly because of my kidney cancer that I'm having this and partly because I was having pain in my left side and now in my right, too.

My kidney doctor is concerned about the left side pain because of it's location near the colon.  I have a strong history of colon cancer.  Both parents and my aunt had it, twice each.

The right side pain is something newer, up in the ribcage area.  It started by feeling like my liver or some other organ was being pinched by my ribs when I bent over but now it seems to be a dull ache, there all the time.

Hopefully, they won't find anything but the yummy barium smoothie will help tell the tale!

Sunday, November 16, 2008

Sleep, tired, nap, Sleep...

Seems like an endless cycle of either sleeping or being sleepy, napping or dozing off.  I miss the olden days when we used to have "project weekends" and get so much done, things built, rooms organized, going places, doing things, living.

My life now seems like it's a prelude to death.  I mostly can't stay awake for anything.

Yesterday I just slept most of the time.

I got up this morning and went to church - my kiddies sang at the first service, then another group rang at the second.  I left right after the bells and was home by 11:15AM.  And I napped until I had to leave for rehearsal at 4:45.  Home by 6:15 and - napped until dinner.  Ate and slept during TV. 

What a bore I must be.  Can't go anywhere, or do anything because I'm too tired. 

I cancel piano students because I'm too tired to clean stuff off  the piano before they come, don't call friends because I don't have the energy to talk. 

We run out of stuff because I'm to tired to go to the grocery and I can't remember when I vacuumed last.  And dust is everywhere.

Not that I'd spend my time cleaning if I had it but I'd like to make the choice myself what to do and not just depend on my lack of energy.

Maybe sometime I'll take a pile of Cortef and be done with it.  I'll gain my Cushie weight back again but maybe it would be worth it.

Thursday, November 13, 2008

Doctors who want to ban the availability of saliva testing


Oh jolly.

Diane, a thyroid and adrenal patient, informed me of a recent visit to a local Endocrinologist. The doc stated that she was on a committee that is working with the FDA to do away with saliva testing, strongly proposing that it’s not accurate testing and is “harming” people.

Well, let’s see. For a couple of years now, thyroid patients who strongly suspect they have adrenal fatigue by the reactions they have to desiccated thyroid have been using saliva testing…and lo and behold, the results they receive nearly completely conform with how they feel! i.e. saliva testing, which tests one’s cortisol levels at four key times during a 24 hour period, has worked beautifully in helping thyroid patients with adrenal fatigue identify their problem, in helping these patients doctors have a better understanding of their problem, and knowing better what might be their best treatment, which can range from using licorice root, to over-the-counter adrenal support, to hydrocortisone (HC).

Harmful?? Give me a break. (And why are we not surprised this is coming out of the mouth of an Endocrinologist.)

Could it be that medical school trained doctors just hate and despise any method which a patient might benefit from WITHOUT going to the doctor and paying big bucks?? hmmmm. And once again, could it be that a method NOT taught in medical school just MIGHT be a good one (just as desiccated thyroid like Armour, Naturethroid, etc. is far, far better than Synthroid or Levoxyl, which ARE taught in medical school)?

The FDA approved saliva testing for AIDS in 2005. They approved saliva testing for ovulation in 2003. They approved saliva testing to detect if a woman is going into premature labor in 1998. And there’s many more they have approved. So…perhaps this is all a gasp of a committee who hates to see patients have some control over their health (terrible, awful thing, isn’t it?) or the cry of a committee that only reveals its ignorance.

p.s. Dr. Best of San Antonio recently posted the following excellent article on saliva testing:

Wednesday, November 12, 2008

Don't Dogs Have All the Luck?

Holistic Ways to Treat Cushings Disease versus Conventional Medicine | Pet Herbal Info Blog:
"...Cushings disease is a serious condition that develops in middle aged and older dogs. Since the basic cause of the condition is excess production of cortisol by the adrenal glands, it is also known as hyperadrenocorticism.

Cortisol is a stress hormone that is produced by the adrenal cortex on signals received through ACTH (adrenocorticotrophic hormone). Cortisol plays an important role in metabolism and higher than required levels in the body can lead to symptoms like hair loss, muscle weakness, dry and brittle skin, pot belly and a significant increase in thirst and urination.

Although holistic treatment has been associated mainly with alternative therapies, medical science has slowly started accepting the philosophy of medical care. Holistic health care is not a method of treatment but an approach to how to go about treating disease. Holistic treatments consider that all aspects of life are closely interconnected. Symptoms are simply the body’s way of showing that it needs attention. Fever, for example, is considered as body’s own effort at fighting infection.

Inasmuch as Cushing’s in dogs is concerned, holistic treatments would rather focus on the underlying cause, which is a dysfunction of the adrenal glands. Holistic treatments prefer natural medicine for Cushing’s disease like herbs and dietary modifications that support adrenal health. Natural medicine is based mostly plant based and contains complex compounds. This gives them multiple properties of supporting general health as well as managing specific symptoms.

Pharmaceutical drugs on the other hand are single compounds and based on research that shows their effect on specific organs. While pharmaceutical drugs do have the desired effect and relieve symptoms, they are focused mainly on suppressing symptoms only and are prone to have harmful side effects.

For Cushings, the drugs used for treating the condition actually destroy adrenal tissue. One can very well imagine what an uncontrolled destruction of the tissue of an important endocrinal gland would lead to. For controlling this destruction, the administration of these drugs needs to be closely monitored lest they cause further complications. Most of the monitoring is done by trial and error with the help of regular blood tests.

The bottom line is that it needs to be understood that the basic goal of treatment is the long term wellness of your pet. Regardless of the therapy that you opt for, a broad outlook that encompasses all aspects of the disease and the body is better than achieving a short term goal of suppressing visible symptoms.

We Recommend:

Cushex Drops are a natural, safe and effective blend of both herbal and homeopathic ingredients specially selected to treat Cushings in pets. Each ingredient of this natural remedy has a specific role to play in normalizing adrenal function, balancing corticosteroid levels or reducing the troublesome symptoms of this condition. Cushex Drops are easy to administer and the dosage can be adjusted to suit pets of all sizes..."

Diabetes is on menu at lunch - Your life - Belleville News Democrat

Diabetes is on menu at lunch - Your life - Belleville News Democrat:
"...Kidney cancer care tailored

A study of nearly 1,500 kidney cancer patients at UCLA in the last 15 years shows that an aggressive, tailored treatment approach results in better survival rates and uncovered cancers that behave differently and need to be treated accordingly.

The one-size-fits-all approach traditionally used in kidney cancer treatment should be changed based on the results of the study, said Dr. Arie Belldegrun, a UCLA professor of urology and senior author of the study, which appeared in this month's issue of Cancer.

'This is the most important work that we've done out of the kidney cancer program at UCLA,' he said. 'We have shown that not all kidney cancer patients are the same, not all localized kidney cancers are the same and not all metastatic kidney cancers are the same...'"


Here it is, after 1:30AM and I just finished up the bi-weekly Cushing's newsletter.  These are a summary of  what's happening on the sites, new bios, news items, new doctors and such.

I use a paid service to send these out and I've paid in advance for a year but I'm thinking that maybe they aren't worth it to keep up.

I post links to the newsletter archives everywhere, on Facebook, on, on on the message boards.  Of all the "hits" links to the newsletters have gotten, only one person has ever commented on them.

I've stopped posting news items on the boards altogether, putting them only in these newsletters and on and I don't think anyone even noticed.

I don't know why I feel a compulsion to do all this "stuff".  I used to do a newsletter before - also a paid service to help with the mailing - and I stopped doing that because it was too much work.  So, here I am again and I don't even know if anyone reads these or gets anything out of them at all.

These sites are taking up more time than my actual job and I think if I just stopped everything now, the boards would go on as if nothing had happened at all.

But, if I stopped, there would be no "me" anymore, no identity.

Tuesday, November 11, 2008

Veterans Day

My husband just came back from his annual Veterans Day rally and parade. He's so proud to have served his country.


Monday, November 10, 2008

We Are Not Alone: Learning to Live With Chronic Illness

MaryO'Note: I don't usually write, or post, book reviews, but I just love this book and I'm so glad to see it back in print. I've owned this before my Cushing's days, when I "just" had osteoarthritis - another disease I wasn't supposed to have, at least at my young age.  This book gave me such hope and inspiration when I felt I was so alone with my "stuff".  It still sits on my bedstand and I read it when I'm feeling down and helpless.

I've bought copies for everyone I know who might benefit from this - and that's practically everyone!  Because it's an older book, I got lots of copies at second hand book stores and gave them to all my friends.

So, I'm glad to see that it's listed on amazon again and anyone can get it brand new .

We Are Not Alone: Learning to Live With Chronic Illness by Sefra Kobrin Pitzele

chronic-illness Book Description
This is an essential layperson's guide to coping with chronic illness-- or the 50 million Americans who suffer from diseases such as arthritis, diabetes, and multiple sclerosis, and for the people who care for them.

With firsthand insights of one who has been there, Sefra Pitzele details every phase, from the frightening onset of disease through the process of readjustment to the successful adaptation to new norms. She addresses the issues that most concern the chronically ill: dealing with relationships; participating in sexual activities; helping your doctor help you; managing pain and depression; maintaining humor and dignity; more. She details adaptive living strategies from new ways to shop and cook to ingenious modifications at home and at work. There are nationwide listings of helpful organizations, support groups, products, and services. 44,000 copies in print.

About the Author
Sefra Korbin Pitzele is Secretary of the National Sjogren's Syndrome Association and serves on the Operations Committee of the Minnesota Chapter of the Lupus Foundation of America. She is co-founder, co-publisher, and Vice President of ADVANTAGE: A Magazine for People with Chronic Health Conditions. She is often the featured speaker at healthcare conferences and on radio and television shows.

Sunday, November 9, 2008

I just liked this Motto


It seems that there have been so many storms in my life, some major, some little summer showers.

I guess everyone has these storms, but it seems so much worse when it's happening to us.  I know I always have felt so alone with my various things, whether they be illnesses or anything else.

When I had Cushing's, there was no one else around who had ever heard of that, even in dogs.  It was something that "no one" got, therefore I couldn't have it, either.

When I got kidney cancer, I wasn't supposed to get that, either.  I was supposed to be  an older man of a different race who smoked and had polycystic kidneys.  According to my family history,  I was supposed to get colon cancer.  Maybe I still will.

I think the feeling that we are alone with whatever is a universal thing.  I see it on message boards all the time, people thinking that they are the only person to have whatever symptom.  But they aren't.  Lots of people seem to be dealing with all kinds of things.

Thanks to the Internet, more and more of us are able to find each other.  I've been able to find other Cushing's sufferers, some who have had Cushing's even longer than I have.  there are younger women with kidney cancer, too.

Thanks to the Internet - it's helping me, and lots of others, dance in the rain.

Features | | The San Diego Union-Tribune -- 'I'm really optimistic about the future'

'I'm really optimistic about the future':
"Like when only months after she graduated from Fashion Careers College in San Diego in 1993, Sanchez was diagnosed with Cushing's Syndrome, a hormonal disorder caused by a benign tumor in her pituitary gland.

“I had plans to launch my own line and move to Europe, but I had to go to San Francisco to get surgery,” she said. “It was a shock to my system and my body went through so much that it took a couple years for me to get back in the swing of things.”"

survive the journey: Blech...

Robin's Cushing's Summary in survive the journey: Blech...:
"...Thus, my life is a rollercoaster. And it is for most folks trying to figure out hormone replacements 'manually' instead of being on autopilot like normal people. Just one hormone replacement is not so bad. But factor in several, and it's a different story. Both GH and thyroid replacements need enough cortisol to work correctly. They can cause an already 'low' person to go into AI without sufficient cortisol replacement. Too much cortisol replacement, and one is back into being 'Cushie'. Working one-and-a-half jobs while riding it isn't easy.

Damned disease. I hate it. I used to love a good rollercoaster ride...."

Saturday, November 8, 2008

City nears Ronald McDonald House dream : Local News : Evansville Courier Press

City nears Ronald McDonald House dream : Local News : Evansville Courier Press:
"..About 10 years after Shelley Clark was helped by a Ronald McDonald House, she will work at one as a volunteer.

When she was 16, Clark was diagnosed with Cushing's syndrome, a hormonal disorder. She went to Riley Children's Hospital in Indianapolis for treatment several times that year. Her family accompanied her on the trips and stayed at the Ronald McDonald House there.

About a decade later, Clark heard Evansville soon would have its own Ronald McDonald House and saw an opportunity to give back by cutting the hair of guests who will stay there..."

Quilts, Weight and Life: Addison's Disease

Quilts, Weight and Life: Addison's Disease:
"...Have you heard of Addison's Disease?

'Addison's disease is a rare endocrine, or hormonal disorder that affects about 1 in 100,000 people. It occurs in all age groups and afflicts men and women equally. The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and nonexposed parts of the body.'

I am one of the the rare people with the disease and as such regularly see a specialist. I am on various medications and the steroids are playing havoc with my weight. Let me tell you I have never been a slim person, with the exception of when the Addison's was brewing, however I am now quite overweight...Anyway the fact is I have to lose weight. I feel like a blob. YUK!..."

Jackie's tale sets alarm bells ringing


Last week I failed to distinguish satisfactorily between the fantastical miasmatic theory of disease in the middle ages and the fantastical miasmatic theory of disease as meant by some homeopaths. This made no difference to my argument - that the science of a disease is more interesting than made up nonsense about it - but it was an error, it was mine, and there is no ignominy in clarifying that.

So you're reading Woman's Own, and you get to the "Real life - health" pages, and you see "Most people jump when the phone rings unexpectedly, but for Jackie Dewhurst, 39, it could be deadly".

This was a first person story about Addison's disease, a disorder of the adrenal glands, under the headline A Phone Call Could Kill Me. "Now I have to avoid stressful situations at all costs," says Jackie, "which means I've had to bid farewell to horror films, crowded buses and Saturday clothes shopping ...

"I started working again as a kitchen assistant at a local primary school. At times I worry that the children might give me a shock, but my colleagues are all trained to give me an adrenaline shot should I have an attack."

Addison's disease doesn't sound like that in any medical textbook I've read (apart from anything else you give hydrocortisone, not adrenaline). Your first thought may well be, rather unkindly, that Jackie Dewhurst, 39, is an idiot. Or a blagger, who has hoodwinked Woman's Own for a couple of hundred quid. Or a fan of attention, perhaps, self-dramatising about her health.

She does also say: "I was walking to the shops near my home in Broughton, North Lincolnshire, when some kids wolf-whistled at me. I tried not to panic, but started to sweat profusely, then fainted. I awoke two days later in hospital, attached to life support."

Worse, perhaps it's all true. Her employers must be terrified about the potential for liability.

This is why Jackie is upset. She says the article is rubbish. She spoke to the magazine to raise awareness of Addison's - which is easy to miss - in good faith, with the support of her patients group. She says they made stuff up for a better story. She is angry that they will not issue a clear correction.

I asked Woman's Own if they had any evidence for their headline claim as Jackie says she has never said a phone call could kill her. They declined to comment. Jackie denies ever saying that she worries that the children might give her a shock. She does work in a school though, and she's worried now what her employers might think. Again Woman's Own declined to comment.

Jackie complained to the Press Complaints Commission. Woman's Own mounted a successful defence, involving extensive reference to what were said to be the journalist's contemporaneous notes from the interview with Jackie. The magazine had offered to publish an apology on the issue of adrenaline being wrong, a further article on Addison's, and a letter from Jackie. And that was enough for the PCC.

But there is another issue here, whether Woman's Own had an obligation to check the information. As Jackie says: "Even if I had said all the things they claim ... surely the magazine would have had some responsibility to verify medical information before they published such claims?"

• Please send your bad science to

Thursday, November 6, 2008

Herding Zebras

from Herding Zebras:
"...We are the orphans. We are the zebra's in a world of horses. The ones who have a rare disease many have never heard of. We have no famous speakers to bring life to our voices. We have no sports stars to put a face on Cushing's. We have no pink ribbons. We have no simple tests to tell us if we have it. If no one cures us, our lives will be shortened at best and ended at worst.

We are the sick who are forgotten. We are the ones our doctors dread to see. We are the zebra's mingled with the horses and no one sees our stripes. We are the untreated, the mistreated, and misdiagnosed. Our hooves pound like zebras and no one bothers to hear them..."

Renal cell carcinoma and the use of sorafenib


James MG Larkin, Tim Eisen

Department of Medicine, Royal Marsden Hospital, Downs Road, Sutton, Surrey SM2 5PT, UK

Abstract: Immunotherapy results in a small overall survival advantage in metastatic renal cell carcinoma (RCC), but there is a need to develop more effective systemic therapies. Angiogenesis has an important role in the pathophysiology of RCC and vascular endothelial growth factor (VEGF) is a key mediator of this process. Sorafenib (BAY 43-9006) is a new agent belonging to a class of drugs called kinase inhibitors and inhibits the VEGF, platelet-derived growth factor (PDGF), and c-KIT receptor tyrosine kinases, amongst others. Sorafenib has shown significant activity with manageable toxicity in metastatic RCC in phase 2 studies in patients pretreated with immunotherapy, whilst prolonged progression-free survival in comparison with placebo in a phase 3 study has been reported. Further phase 3 trials in advanced disease are ongoing and a trial of adjuvant sorafenib therapy in RCC is planned.

Keywords: Renal cell carcinoma; metastatic; systemic therapy; sorafenib

Historical Notes from OHSU: Gimme Shelter: round one

Historical Notes from OHSU: Gimme Shelter: round one: "Cushing, Harvey, 1869-1939.
Tumors arising from the blood-vessels of the brain : angiomatous malformations and hemangioblastomas / by Harvey Cushing and Percival Bailey.
Springfield, Ill. ; Baltimore, Md. : Charles C. Thomas, 1928.

OHSU copy with signature of A.J. McLean.

A beautifully ilustrated monograph based on 29 cases of one of the rarest and most interesting groups of intracranial tumors. 'Cushing shared the authorship of this monograph with Percival Bailey. It contains the first extensive classification and description of angiomatous malformations and haemangioblastomas. The detailed and profusely illustrated case reports are, like all of Cushing's case reports, a course of instruction in themselves.' Heirs of Hippocrates, 1163; Courville No. 527; Fulton p.563; Walker No.516; HC 14"

Wednesday, November 5, 2008

Pituitary Alerts

Teach Kids About the Brain and Nervous System
By Nick Ramsay
The brain has five major parts: the cerebrum, cerebellum, brain stem, pituitary gland and the hypothalamus. The cerebrum has two halves, the right and left, and is the largest part. It is responsible for thinking, reasoning, ...
Teach Kids How -

Brain Cancer
By admin
... disinhibition) * Prolonged drowsiness (somnolence) * Seizures * Vision loss A tumor located in the pituitary gland (ie, pituitary adenoma) may increase the secretion of hormones and cause discontinuation of menstruation (ie, ...
Jay's Family Health Neighborhood -

Transsphenoidal Surgery in India
By MaryO(MaryO)
Pituitary adenomas are benign tumors which arise from the pituitary gland itself. They are almost never malignant. Pituitary tumors can be either secretory or non-secretory, referring to whether they overproduce pituitary hormones. ...
Cushing's & Cancer -

The limited role of midnight salivary cortisol levels in the diagnosis of subclinical hypercortisolism in patients with adrenal incidentaloma.


Benedetta Masserini, Valentina Morelli, Silvia Bergamaschi, Federica Ermetici, Cristina Eller-Vainicher, Anna Maria Barbieri, Antonia Maffini, Alfredo Scillitani, Bruno Ambrosi, P Beck-Peccoz and Iacopo Chiodini

B Masserini, Department of Medical Sciences, Endocrinology and Diabetology Unit, University of Milan, Fondazione Policlinico, I.R.C.C.S., Milano, Italy
V Morelli, Department of Medical Sciences, Endocrinology and Diabetology Unit, University of Milan, Fondazione Policlinico, I.R.C.C.S., Milano, Italy
S Bergamaschi, Department of Medical Sciences, Endocrinology and Diabetology Unit, University of Milan, Fondazione Policlinico, I.R.C.C.S., Milano, Italy
F Ermetici, Department of Medical and Surgical Sciences, Endocrinology Unit, Policlinico San Donato I.R.C.C.S, University of Milan, San Donato Milanese, Italy
C Eller-Vainicher, Department of Medical Sciences, Endocrinology and Diabetology Unit, University of Milan, Fondazione Policlinico, I.R.C.C.S., Milano, Italy
A Barbieri, Department of Medical Sciences, Endocrinology and Diabetology Unit, University of Milan, Fondazione Policlinico, I.R.C.C.S., Milan, Italy
A Maffini, Department of Medical Sciences, Endocrinology and Diabetology Unit, University of Milan, Fondazione Policlinico, I.R.C.C.S., Milano, Italy
A Scillitani, Unit of Endocrinology, Casa Sollievo della Sofferenza Scientific Institute, San Giovanni Rotondo, Italy
B Ambrosi, Department of Medical and Surgical Sciences, Endocrinology Unit, Policlinico San Donato I.R.C.C.S, University of Milan, San Donato Milanese, Italy
P Beck-Peccoz, Department of Medical Sciences, Endocrinology and Diabetology Unit, University of Milan, Fondazione Policlinico, I.R.C.C.S., Milano, Italy
I Chiodini, Department of Medical Sciences, Endocrinology and Diabetology Unit, University of Milan, Fondazione Policlinico, I.R.C.C.S., Milano, Italy

Correspondence: Benedetta Masserini, Email:


Objective: The criteria for defining subclinical hypercortisolism (SH) are debated and a real gold standard test or combination of tests is lacking. Recently late night salivary cortisol (MSC) has been described as a sensitive and easy-to-perform marker for diagnosing overt hypercortisolism. No data are available on the role of MSC in the diagnosis of SH. The aim of the study was to evaluate the sensitivity and specificity of midnight salivary cortisol levels in the diagnosis of SH in patients with adrenal incidentalomas (AI).

Methods: In 103 (F/M 69/34) patients with AI, MSC levels were studied. One mg overnight dexamethasone suppression test (DST), urinary free cortisol (UFC) and ACTH plasma levels were also evaluated. Patients were defined as affected by SH if showed 2 of the following criteria: DST > 83 nmol/L, ACTH < 2.2 pmol/L, UFC > 193 nmol/24h.

Results: No difference in MSC levels in patients with SH (3.1±3.1nmol/L) compared with patients without SH (2.2±2.8 nmol/L) was observed. In patients with SH, MSC levels were significantly correlated with DST (R= 0.4, p < 0.05). Using the cut-off of 5.1 nmol/L the sensitivity and the specificity of MSC levels for diagnosis of SH is 22.7% and 87.7% respectively.

Conclusion: In patients with AI normal levels of MSC do not exclude SH whereas high levels may suggest the presence of SH identified by conventional tests. Thus MSC is not suitable as screening test, although it may be used in conjunction with other tests as confirming test in selected patients.

Tuesday, November 4, 2008

Transsphenoidal Surgery in India


India is fast emerging as one of the most sought after global health destinations for transsphenoidal surgery

It has outgrown its mentors in their own feat. Medical tourism is no longer confined to people combining their surgery with quick visits to the Taj Mahal. Low cost treatment is the main appeal that pulls medical tourists to India, but this is no longer the only attraction. It boasts of a very strong medical infrastructure that provides state-of-the-art international standard services to several patients who throng India for an attractive amalgamation of cost-effective and world-class treatment. The costs incurred in medical treatments here, are almost one-tenth of what patients have to spend in most of the western countries. Most of the medical tourists find the infrastructure and technology at par with that in USA, UK and Europe. The good facilities provided in India for transsphenoidal surgery are certainly beneficial and also the skyrocketing medical costs and long waiting lists to get treated by the specialists in the western countries are helping medical tourism industry.

What is transsphenoidal surgery for pituitary adenomas

Pituitary adenomas are benign tumors which arise from the pituitary gland itself. They are almost never malignant. Pituitary tumors can be either secretory or non-secretory, referring to whether they overproduce pituitary hormones. Secretory tumors cause disease because of the excess quantities of hormones which they secrete (release) into the bloodstream. The most common type of secretory pituitary tumor is termed a prolactinoma. Excess prolactin in the blood may lead to irregular or absent periods in women, decreased libido and erections in men and infertility or milk production in men or women. However, there are excellent medicines available to treat this disorder, so surgery is rarely needed. Most patients with prolactinomas are treated by endocrinologists, who are medical specialists in gland and hormone disorders.

How is this surgery performed?

Most pituitary tumors can be removed transsphenoidally. The approach is through the sphenoid sinus, one of the facial air spaces behind the nose. Rarely, a craniotomy is required, where the skull is opened to reach the tumor. There are three basic approaches to the sella, which is the bony cavity in the skull base where the pituitary gland is located. Many neurosurgeons now use a direct transnasal approach, where an incision is made in the back wall of the nose and the sphenoid sinus is entered directly. It is also possible to make an incision along the front of the nasal septum, and make a tunnel back to the sphenoid sinus. Finally, it is possible to make an incision under the lip and approach through the upper gum, and enter the nasal cavity and then the sphenoid sinus.

A growing number of uninsured and underinsured Americans are seeking low cost quality medical care and surgery in India. It has the top-notch centers for open heart surgery, pediatric heart surgery, hip and knee replacement, eye surgery, dentistry, bone marrow transplants and cancer therapy and virtually all of India’s clinics are equipped with the latest electronic and medical diagnostic equipment. Medical procedures like transsphenoidal surgery in India cost approximately 20% to 30% compared to the ones in America.

To know more about transsphenoidal surgery in India:

Submit your case details at:

I missed it!

With all the hubbub over the weekend, and finding out yesterday morning that my best friend was in the hospital, I completely forgot that yesterday was the 21st anniversary of my pituitary surgery at NIH.

I even had a reminder on my calendar, a notice on the calendar section of the message boards, all kinds of places.  But it just slipped my mind.

Maybe this is a sign that I should somehow forget that I had Cushing's, that I should move on with my life as a "cured" Cushie.

My new life, in addition the the panhypopituitarism, involves kidney cancer and, for me anyway, that's a zebra disease.

I consider this a zebra disease because it's one that I shouldn't have had.

For one thing, I "should" have had colon cancer because both parents and an aunt had it twice each.  Of course, there's no guarantee that I won't get that, too.

Anyway, other "zebra" reasons are the risk factors for kidney cancer aka renal cell carcinoma.
The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:

  • Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.

I was younger than this.

  • Sex. Men are more likely to develop renal cell carcinoma than women are.

I am female

  • Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.

Not me!

  • Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.

A Cushing's gift

  • High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn't clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.

Never had this until the kidney cancer.  It went away immediately post-op.

  • Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.

What?  Me work?.

  • Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.

Nope.  Some sites also list polycystic  kidney disease.  I don't have that but half my husband's family does.  Hmmm - wonder if that's contagious

  • Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.

I've wondered about this but, you know, it's too "rare".

  • Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you'll develop one or more renal cell carcinomas.

Not that I know of. 

So, yesterday after I went with DH to his doctor, I went to see my new zebra doctor - my kidney surgeon - for pain I've been having.  Over the summer he said if I "wanted" my CT scan earlier than my next visit, just let him know.  I've been having pain in my abdomen and he is sending me for the CT I requested.  Plus, he suggested I call my gastroenterologist just in case there's something happening in my colon. 

Oh no!  What if I finally get the disease I always felt I was destined to get?

But, like Scarlett O'Hara, I'll think about that another day and head off with DH to see his new surgeon...

Dr. Harvey Cushing

A snippet from

...I read in an article on the internet that Harvey Cushing, one of the best neurosurgeons of the 20th was born in Ohio in the United States in 1869. The American surgeon vastly improved the chances of patients surviving complex neurosurgery and he was one of the first to use x-rays for the identification of brain tumors. Apart from being one of the most qualified teachers of neurology, he also made a ground breaking discovery pertaining surgery on the pituitary gland, a gland at the base of the brain that is part of an important network of glands that regulate ones hormones. Cushing was the first to discover Cushing's disease that results in rapid weight gain in the face and torso, muscle degradation and insomnia, as well as the weakening of skin tissue, thereby causing it to haemorrhage. The disease is caused by a tumor in the pituitary gland, stimulating it to produce extensive amounts of ACTH, a hormone normally responding to stress, which, in turn, triggers the excessive release of cortisol, a hormone responding to ACTH that causes the said symptoms. The only difference between Cushing's disease and Cushing's syndrome is the cause, for Cushing's syndrome is merely a dysfunction of the pituitary gland rather than a disease. Harvey Cushing was able to cure this condition by surgical intervention...

Monday, November 3, 2008

Treatment of pituitary dependent Cushing's disease with the multi-receptor ligand somatostatin analog pasireotide (SOM230): A multicenter, phase II trial.


Treatment of pituitary dependent Cushing's disease with the multi-receptor ligand somatostatin analog pasireotide (SOM230): A multicenter, phase II trial.

Author(s)    Boscaro M, Ludlam WH, Atkinson B, Glusman JE, Petersenn S, Reincke M, Snyder P, Tabarin A, Biller BM, Findling J, Melmed S, Darby CH, Hu K, Wang Y, Freda PU, Grossman AB, Frohman LA, Bertherat J

Institution    Department of Clinical Endocrinology (M.B.), University of Ancona, Italy; Seattle Pituitary Center (W.H.L.), Swedish Neurosciences Institute, Seattle, Washington, USA; Regional Centre for Endocrinology and Diabetes (B.A.), Royal Victoria Hospital, Belfast, UK; Oncology Clinical Development (J.E.G., C.H.D., K.H., Y.W.), Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, USA; Division of Endocrinology (S.P.), Medical Center, University of Essen, Germany; Medizinische Klinik Innenstadt Klinikum der Universität München (M.R.), München, Germany; University of Pennsylvania (P.S.), Philadelphia, USA; Service d'Endocrinologie (A.T.), CHU Bordeaux, Haut Lévêque, Pessac Cedex, France; Massachusetts General Hospital (B.M.K.B.), Boston, USA; Midwest Endocrinology Associates (J.F.), Milwaukee, Wisconsin, USA; Cedars-Sinai Pituitary Center (S.M.), Los Angeles, California, USA; Department of Medicine (P.U.F.), Division of Endocrinology, Columbia University, New York; Department of Endocrinology (A.B.G.), St Bartholomew's Hospital, London, UK; Department of Medicine (L.A.F.), Section of Endocrinology, Diabetes and Metabolism, University of Illinois at Chicago, Chicago, Illinois, USA; Center for Rare Adrenal Diseases (J.B.), Department of Endocrinology, INSERM U567, Paris-Descartes University, Cochin Hospital, Paris, France.

Source    J Clin Endocrinol Metab 2008 Oct 28.

Abstract    Context: There is currently no medical therapy for Cushing's disease that targets the pituitary adenoma. Availability of such a medical therapy would be a valuable therapeutic option for the management of this disorder.

Objective: To evaluate the short-term efficacy of the novel multi-receptor ligand somatostatin analog pasireotide in patients with de novo, persistent or recurrent Cushing's disease.

Design: Phase II, proof-of-concept, open-label, single-arm, 15-day multicenter.

Patients: Thirty-nine patients with either de novo Cushing's disease who were candidates for pituitary surgery or with persistent or recurrent Cushing's disease post surgery without having received prior pituitary irradiation. Intervention: Patients self-administered subcutaneous pasireotide 600 microg twice daily for 15 days. Main Outcome Measure: Normalization of UFC levels after 15 days of treatment.

Results: Of the 29 patients in the primary efficacy analysis, 22 (76%) showed a reduction in UFC levels, of whom 5 (17%) had normal UFC levels (responders), after 15 days of treatment with pasireotide. Serum cortisol levels and plasma ACTH levels were also reduced. Steady-state plasma concentrations of pasireotide were achieved within 5 days of treatment. Responders appeared to have higher pasireotide exposure than non-responders.
Conclusions: Pasireotide produced a decrease in UFC levels in 76% of patients with Cushing's disease during the treatment period of 15 days, with direct effects on adrenocorticotropin release. These results suggest that pasireotide holds promise as an effective medical treatment for this disorder.

Language    ENG
PubMed ID    18957506

survive the journey: The Cardiovascular Risks of Growth Hormone Deficient Adults

Robin posted this today and I found it especially timely:
survive the journey: The Cardiovascular Risks of Growth Hormone Deficient Adults: "I have growth hormone deficiency (GHD) and other pituitary hormone deficiencies due to a pituitary tumor. My surgery to remove the tumor did not help any, and when I had the Arginine GH stimulation test this past spring, I did not produce nearly enough GH. GH is pulsatile and needs stimulation in order to be tested correctly. IGF-1 is not a reliable marker of GH production."

Like Robin, I am also "panhypopituitary" due to my pituitary tumor. I also am growth hormone deficient. Unfortunately, due to the kidney cancer I had, I can no longer take growth hormone.

The news item she quoted is a bit disturbing to me. I don't want to think of possible cardiovascular risks of not getting my growth hormone injections any more. On the other hand, I don't want to, and cannot medically, take growth hormone at this time because of the cancer.

So, I guess my eventual choices will be to protect my heart or protect my kidney. Which will win?

Thanks, as always, Robin for the great article!

The medical treatment of Cushing's disease: effectiveness of chronic treatment with the dopamine agonist cabergoline in patients unsuccessfully treated by surgery.


The medical treatment of Cushing's disease: effectiveness of chronic treatment with the dopamine agonist cabergoline in patients unsuccessfully treated by surgery.

Pivonello R, De Martino MC, Cappabianca P, de Leo M, Faggiano A, Lombardi G, Hofland LJ, Lamberts SW, Colao A

Department of Molecular and Clinical Endocrinology and Oncology [R.P., M.C.D.M., M.D.L., A.F., G.L., A.C.], and Neurosurgery [P.C], "Federico II" University, Naples, Italy and Department of Internal Medicine [R.P., L.J.H., S.W.J.L.], Erasmus Medical Center, Rotterdam, The Netherlands.

J Clin Endocrinol Metab 2008 Oct 28.


Background: The role of dopamine agonists in the treatment of Cushing's disease (CD) has been previously debated. Aim: The aim of this study was to evaluate the effectiveness of short-term (3 months) and long-term (12-24 months) treatment with cabergoline in patients with CD.


Patients and Methods: Twenty patients with CD unsuccessfully treated by surgery entered the study. Cabergoline was administered at an initial dose of 1 mg/week, with a monthly increase of 1 mg, until urinary cortisol levels normalized or the maximal dose of 7 mg/week was achieved. The responsiveness to treatment was evaluated according to changes in urinary cortisol excretion: a decrease greater than 25% was considered as a partial response, whereas complete normalization was considered as a full response at short-term evaluation; persistence of normal cortisol excretion was the only criterion to evaluate the response at long-term evaluation.

Results: After short-term treatment, 15 (75%) patients were responsive to cabergoline treatment. Among these, normalization of cortisol excretion was maintained in 10 whereas treatment escape was observed in 5 patients after 6-18 months. Among the 10 long-term responsive patients, eight were followed for 24 months, whereas the remaining 2 were followed for 12 months, due to cabergoline withdrawal for intolerance. A sustained control of cortisol secretion for 24 months of cabergoline treatment at the maximal dose, ranging from 1 to 7 mg/week (median: 3.5 mg/week) without significant side effects, was obtained in 8/20 (40%) patients.

Conclusions: The results of this study demonstrated that cabergoline treatment is effective in controlling cortisol secretion for at least 1-2 years in more than one third of a limited population of patients with CD. If this evidence is confirmed by additional studies, this agent may be considered as a useful treatment option in patients with CD who are unsuccessfully treated by neurosurgery.


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