Monday, September 29, 2008

Support Groups – Self Help is the Best Help

Any serious illness causes considerable personal distress and anguish. To add insult to injury, you often feel isolated and cut off from the rest of the world, since most 'normal' people cannot understand what you are going through. While your doctor can provide you with the medical care you need, you often need emotional support as well, which very few doctors can provide! While friends and family members usually provide such support, often this is not forthcoming in the case of certain sensitive problems such as AIDS, infertility or cancer, making patients even more miserable. This is where support groups come in. Such groups bring together people troubled by the same problem in order to share emotional and moral support, plus practical information. Support groups traditionally meet face to face, but now many meet over the internet as well!

Support groups act as a complement to medical care - they definitely do not replace your doctor! The very act of sharing the emotional side of an illness and exchanging helpful advice can encourage recovery or simply make it easier to cope with your problems. For example, if you've just been diagnosed as cancer, you may hide having a your anxiety and fear from your family and friends to avoid upsetting them. In turn, to avoid saying the wrong thing, they may say nothing at all. These barriers of silence tend to melt into refreshing candour when you meet others who are coping with a similar burden. Similarly, if you're caring for someone with Alzheimer's disease, sharing your experiences with other caregivers can help you recognize that occasionally feeling resentful and sad is normal.

Many group members can often offer pearls of practical advice, which help you to cope better with your illness. For example, infertile patients need to take daily injections when undergoing in vitro fertilization (IVF) treatment. One patient discovered that if she applied a ice cube to the site before the shot, the area would get numbed, and the injection wouldn't hurt as much. She shared her knowledge with others in the group so that they could also benefit from her experience. Support groups also allow you to gain more control over your life because you can learn from others who have already been through what you are going through now. An additional bonus is that they can help you to find the best doctor or hospital for your particular problem, because you can learn from other member's experiences with various doctors - both good and bad !

Besides offering moral support, a good support group may actually help you live longer! Researchers from Stanford University and the University of California at Berkeley studied 86 women with advanced breast cancer for 10 years. They found that the women who joined a support group outlived those who did not by an average of nearly 18 months.

Support groups aim to achieve many goals. Primarily, they provide compassionate and informed help to people experiencing hardship and agony due to an illness. They can also help increase visibility about issues which concern them by educating the public and presenting their viewpoint through the media. In the US, many support groups act as powerful lobbies. For example, groups of parents of children with mental disability have been able to convince law-makers to pass legislation which prevents discrimination against disabled citizens. Many groups have also been successful in raising funds to help promote medical research into their disease. Others have published books and leaflets about the illness in order to disseminate information more widely, thus helping to dispel many myths and misconceptions about the disease among the general public.

Support groups help primarily because they make you realize that 'you are not alone'. The very process of being able to ventilate your feelings and to get and provide emotional support can prove to be a healing experience.

Try and identify a support group which contain a mix of veterans and newcomers at different stages of coping with an illness. People who have lived with health problems for years usually develop more insight and have more information to offer, while new 'entrants' offer another perspective. The group of your choice should consist of people with whom you feel comfortable, and leaders who empathize, by gently drawing out the shy members and keeping in check those trying to dominate. A good group should have a stable track record of meeting the needs of all members.

Not all support groups are reliable. Don't be fooled by groups that put their interests before yours. Avoid groups that: (1) promise sure cures and quick solutions; (2) urge you to stop prescribed treatment and recommend a single solution to your problem; (3) insist that you reveal private or sensitive information; or (4) charge high fees or compel you to buy certain products. Most support groups are free, or support themselves by collecting voluntary donations or charging modest membership fees to cover expenses such as refreshments or production costs of leaflets/brochures.

Many good doctors are happy to refer their patients to such groups. They realize that support groups provide valuable emotional support, which doctors, as busy professionals, simply cannot, because of time constraints. Unfortunately, misconceptions about support groups prevent many people from making use of this valuable source of help. Some patients become anxious that joining a support group might cause them to dwell even more on their problem, while others may feel that their illness is too private or personal or traumatic to share with a group of strangers. You may also believe that you can handle the crisis on your own. In reality, any serious illness is too traumatic not to share with others, and there is nothing wrong about reaching out for help. Such a step is definitely not a sign of weakness. A support group simply provides a safe, warm and supportive environment: you need never say a word if you don't want to.

Fortunately, Indian patients are now realizing the importance of networking amongst themselves, and, presently, many support groups have sprung up all over India for illnesses ranging from Azheimer's disease, cancer, infertility, muscular dystrophy, multiple sclerosis to thalassemia. However, a major problem in India is that the culture of self-help is still very new. Most patients are passively dependent on their doctors, and they still expect their doctor to do everything for them. Remember, however, that the more you help yourself, the easier it is for your doctor to help you!

Are you faced with an illness ? Rather than wallow in misery and feel sorry for yourself, you can put your experience to good use by starting a support group to help others who face the same problems. Remember, that helping others is the best way of helping yourself ! After all, if patients will not look after their own interests, then who will?

Sunday, September 28, 2008

More Kidney Cancer...



Today I spent my first day using the cancer drug, Sutent. To detail the story of how I got here, look back in this blog to posts here and here. To shorten the story… after finding a lump on my right kidney a year ago, I have undergone a nephrectomy, and while the initial scans found no signs of metastasis, a follow-up exam four months ago has led me to my diagnosis of advanced renal cell carcinoma.

Dr. John Karod was given the unpleasant task of calling me on August 6, and informing me of the second biopsy results - the presence of kidney cancer cells in my lungs. That led to further full body CT scans, brain MRI scans, and bone scans which were done on the 11th and 18th of August at PenBay hospital and a visit with Dr. Nadia Ramden, an Oncologist in the cancer care unit at PenBay on August 12th. After  reviewing my case, she advised me that the bone scan and brain scans were clean of any current cancer, but that there were several cancerous growths, mostly 1-2 cm in size in both of my lungs and that there was also 5-6 cm growth in my abdomen. She suggested that I start taking the drug Sutent but we decided to wait to start that until I met with Dr. Glen Kroog at Memorial Sloan Kettering Cancer Care Center in New York City.

I made a quick trip down to New York for that appointment on August the 28th. I am so lucky to have one of the world’s greatest sisters who lives in Manhattan and she was indispensible through this process. Dr. Kroog suggested that I would be a candidate to join a clinical trial comparing Pfizer’s Sutent to an unreleased anti-angiogenesis drug, but I would need new baseline scans, so we scheduled those for September 8th through the 11th, and I returned to Maine for Labor Day Week with my daughter and son-in-law, before going back to New York for the tests.

With some very minor growth evident, those scans were essentially the same as the PenBay results, but the Kidney Cancer Group did not think that the benefits of participating in the clinical trial were worth the inevitable stress of the bi-weekly travel involved so I decided to not participate in the trial, and to have Dr. Ramden be my primary oncologist, but I also fully expect to consult regularly with Dr Kroog at MSKCC.

The technology involved in this process has been amazing.  The Radiology, MRI, and Nuclear Medicine departments at both institutions have wonderful Doctors and technicians using world class state of the art equipment. I was pleasantly surprised by the quality of the technology used at PenBay, but was equally impressed with the quality of the human interaction in New York which was much more down home friendly than what I anticipated from big city hospital.

So here I am, on day one of chemotherapy. Pfizer is supplying me with the drugs under their First Resource plan in conjunction with my Medicare Part D coverage for no out of pocket cost to me beyond the $271 per month I presently pay under my various Medicare plans. I am told that were I not insured, the cost of the drugs, and the number co-pays would be figured on, would be over $80,000 per year ($350 per pill).

I have yet to have the first symptom or pain, but am preparing for a battle. The Sutent is supposed to stop the process of making the new blood vessels necessary for the cancer to grow. This process is called anti-angiogenesis, and I sure hope it works. It clearly does for some folks, sometimes with few side effects, but a whole long possible list of bad things for others. My life has been interesting to me so far, and I don’t expect it to change any time soon. Here’s hoping for the easy path this time.

Saturday, September 27, 2008

A Cushing's Referral

I referred a patient to my alma mater today.

And I have to say, it felt a bit weird. To be calling WFMC, to be faxing in the paperwork TO them, instead of WITH them.

It was a case of Cushing Syndrome. Always difficult, these cases, because lab results are often equivocal, and often contradictory. Case in mind, guy who previously had a normal 24 hour urine free cortisol. I did a 1 mg dexamethasone suppression test which was negative, yet close enough to being positive that it just didn't smell right. And so I repeated the urine studies which this time came back positive. And did a salivary cortisol, further confirmed by the 2-day low dose dexamethasone suppression test I did, with a nonsuppressed ACTH.

His MRI showed a pituitary microadenoma. Presumptive diagnosis: Cushing Disease. Personally, I was confident enough of the diagnosis that I didn't think an IPSS (inferior petrosal sinus sampling) was necessary. But the neurosurgeon wanted that, and it's not something we have readily available here.

So, he's headed up to see if they feel he needs the IPSS, or if they are willing to operate on him based on the data I've collected thus far.

It's a strange feeling sending the patient up. In a way, it's pride, telling the patient that if I was going to have pituitary surgery, it would be by one of WFMC's neurosurgeons' hands. And another, that near-gleeful feeling, reminiscing and telling the patient how the system there works, and the qwerks of some of the consultants there and helping choose a consultant and surgeon for them, based on what the patient wants. And yet, mild anxiety, sending a patient to your ex-mentors and teachers, not as a fellow of theirs anymore, but as a colleague, hoping that when they read your referral letter and see your patient, they go

"Ah, Dr. Vagus did a good job working him up. We taught him well."

And not

"What on God's green earth was that idiot doing?? This patient doesn't have Cushings!!"

I think they taught me well.

I hope.

We shall see when after they are done with their evaluation.

Friday, September 26, 2008


I have been so busy posting news items, keeping up with the other blogs and websites that I haven't really posted about how I'm doing lately.

I'm pretty exhausted from my new part-time job and I hope they hire someone soon.  I don't mind the computer/office stuff but I' don't think I'm doing all that well with my directing groups.  One of these groups is supposed to be ringing in church next Sunday and I don't think they'll be ready.

My new puppy is keeping me busy, too and I'm running home from the job or elsewhere to get her outside before she has an accident and I'm not always successful.

Water aerobics is going ok.  I've managed to make it to the first 4 classes.  We'll see if I can continue with this.  I like the class but it's just taking up so much time, driving there, the class, the hot tub, the shower, then running to work.

I'm using my days off for medical appointments.  Today was a mammogram and dexa scan.  I haven't had a dexa since Cushing's.  I know I'd lost height then.  I wonder how much more I've lost!

In a couple weeks is my appointment with my endo.  I wish there was more he could do for me, without my kidney cancer doctor blocking whatever but I'm kinda stuck.  This doctor says I should take thus and so.  The other doctor says it's bad for me.  Doctor 2 wants to do a little "procedure".  Endo says that might be too much stress. 


I just want to be reasonably healthy and live for a few more years in relative comfort Cushing's and cancer-free.  Is that too much to ask?

Help Chavel walk again


Kimoni Harris, Staff Reporter

image Chavel Waller has not led a normal life for the last three years.

Waller, 12, who attends the John Mills Primary and Junior High, was diagnosed with Cushing's syndrome, a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol.

Cortisol performs vital tasks in the body. It helps maintain blood pressure and cardiovascular function. The disease prevents Waller from standing on his own.

Persons suffering from depression, alcoholism, malnutrition and panic disorders also have increased cortisol levels.

When his mother Diane Style visited THE STAR, she said Waller, who is her third child, was diagnosed with the disease about three years ago while he stayed with his father.

Style said it was when she visited his father's house, she realised that her son could not stand on his own.

"I asked him (the father) over and over what happened, what is wrong with Chavel. All now him nuh answer," she said.

Still optimistic

Style said the doctors at the Bustamante Hospital for Children have concluded that Waller will soon become immobile. His mother, however, does not believe this. "I don't know what they mean him caan get better. He was born a healthy child and I want some other doctors to look at him.

Style is appealing for help as Waller has become disruptive in class.

"He will beat up the other kids and get in fights all time. I asked why he was misbehaving and he said he's tired of the sickness and he is feeling pain all the time. I asking that anyone who can help me to buy a walker and a pair of surgical boots for him. The walker will help him to move around and more than anything else, I wish he could go to The Mico Care Centre where I know he would be taken care of properly."

Anyone wishing to assist Chavel Waller can contact his mother at 504-5922.

Renal Cell Carcinoma Rates Compared With Health Status And Behavior In The United States


From - Renal cell cancer is the third most common urologic malignancy and the seventh most common cancer overall. Incidence rates have been increasing steadily each year in the United States (U.S.) and Europe during the last 3 decades1. There are projected to be 54,390 new cases and 13,010 deaths from renal cell cancer in 2008 in this country2.

Renal cell cancer imposes a significant burden on the U.S. healthcare system, as its diagnosis involves advanced radiological testing and its treatment often involves surgery, hospitalization, and regular surveillance visits to assess for recurrence. Costs associated with the diagnosis and treatment totaled approximately $400 million in 20003.

Risk factors associated with renal cell carcinoma rates have been investigated and reported in the literature. Cigarette smoking, obesity, physical inactivity and diabetes have been found to increase risk in past studies. Hypertension appears to independently influence renal cell cancer risk. A protective effect of fruit/vegetable consumption has been reported while excessive alcohol consumption has been found to be a risk factor in some studies1.

In this study, we compare renal cell carcinoma incidence and mortality rates among states to factors suspected of influencing kidney cancer risks. Family income, lack of health insurance, urbanization and the population density of urologists among states were included to adjust for access to health care and socioeconomic status. Urbanization was selected as a factor for consideration in this study because hospitals and physicians are more likely to be located in urban areas. The prevalence of urologists in the population may be related to renal cancer screening and treatment.

In this study we found that smoking, obesity and physical inactivity correlate directly with renal cell carcinoma incidence and mortality rates while hypertension correlates directly with incidence rates solely. High fruit/vegetable diet, family income and urbanization correlate inversely with renal cell carcinoma mortality rates. The prevalence of urologists correlates directly with incidence rates for males but not females.

There are limitations in the ecologic approach taken in this study that may cause uncertainties in the results. The analyses are not based on individual data but on data representing an entire state - which does not take into consideration the range of values within the state. The results of this study, suggesting that cigarette smoking, obesity and physical inactivity may be associated with increased renal cell cancer risk, while a high fruit/vegetable diet are may be associated with decreased renal cancer risks, are consistent with studies in the literature.


1. Renal Cell Carcinoma Rates Compared With Health Status And Behavior In The United States

Addison's Disease

[spelling errors are  left as they are in  the original article]


Mrs. Bernstein's Block 3 This is a site for the students of Mrs. Bernstein's Block 3 Anatomy and Physiology class to collaborate and review course material.

Addison's Disease

Addison's disease affects the adrenal glands which are part of the endocrine system. The adrenal glands, located above the kidneys, secretes the hormone cortisol, a hormone that has hundreds of uses within the body. Cortisol main function is to handle stress. Cortisol also helps maintain blood pressure in the cardiovascular system, slow inflamation of the lymphatic/immune system, balance insulin, regulate metabolism, and maintain a sense of well being in the body. The production of cortisol is control the hypothalamus in the brain and pituitary gland and must be precisely balanced.

  • Addison's disease affects 1 in 100,000 people
  • 2 Types of Addison's Disease: Primary & Secondary Adrenal Insufficiency
  • Addison's is an autoimmune disease, meaning that the body's immune system attack and breaks down the adrenal glands.


Priamary- Caused by degeneration of the adrenal cortex. Tuberculosis may cause adrenal degeneration. Other causes are acute fungal infection and cancer cells spreading from other parts of the body.

Secondary- Caused by lack of hormone from pituitary gland that directs production of cortisol. (More common of the two types of Addison's)

Symptoms:(begin gradually)

  • chronic worsening fatigue
  • muscle weakness
  • loss of appitite
  • weight loss
  • nausea, vomiting, diarrhea (shows 50% 0f the time)
  • irritabilityand depression
  • cravings for salty food
  • loss of menstruation in women
  • low blood sugar

Disease is easy to miss because symptoms start minor and gradually increase

Hormone therapy the is the most common treatment


Jake's Cushing's Disease Story

Hi. My name on the internet is Jake Silver. Some of you know me. Some of you know this Blog. Some of you have never visited before, and that's okay. Today I am going to tell you about my battle with CUSHING'S DISEASE.

It probably all started in 2005. I began to gain a lot of weight very rapidly and only on my face and stomach. I gained about 30 pounds and weighed about 170 at one point. I started this Blog NOV 2005 and throughout I struggled with my weight. I didn't know it was a precursor to more insidious problems to come. My blood pressure rose and I got stretch marks on my thighs and butt.

In the summer of 2006 I began to have serious back pain. I thought maybe my workout routine was imbalanced so I tried to do more back exercises. I also thought carrying my new son (now 2 1/2) contributed to the problem. But it did not go away and in OCT '06 I went to see a Doctor who said I wasn't stretching right. He sent me to Physical Therapy and prescribed Motrin. They gave me a stretching routine to do which felt nice but didn't alleviate my back problems. I returned to the Doctor in DEC '06 and he prescribed more stretching, Motrin and muscle relaxers.

In FEB I suffered a staph infection after shaving...and in March my chest popped while doing dips.

In the summer of 2007 my back pain continued to get worse and now my feet were killing me as well. They sent me to a Spine Specialist who said I had some disc deteroration and some kind of early onset arthritis. At this point my main doctors ran tests for Rhematoid Arthritis and some other nasty things. One nurse suggested it might be Fibromyalgia.

In fall 2007 I was pushing on some wolling equipment at work we call AGE and I was using my chest for leverge and my chest popped in. OUCH!!! I went to the doctor and they discovered I had also fractured 7 ribs in the back at some point earlier.

That is when they questioned me about my blood pressure and my weight...

I mean, here is another photo from my Cushing's Dayz:

and then me a few months after my surgery:

In November 2007 they finally did a 24 Urine test and discovred I had way too high levels of Cortisol, which indicated Cushing's Syndrome.

They referred me to an Endocrinologist, who is brilliant, and he repeated the test to confirm it. Then we had to figure out what was cauing it. I wasn't on any steroids... Well in Nov around Thanksgiving I completely threw my back out and laid on the couch for two days. Then it happened again.

I had to take leave from work... and it turned out that leave lasted for 6 MONTHS. My back was just "gone". It was too painful to stand or sit up so I laid on the couch and crwled everywhere. I tried to do exercise and Physical Therapy but after a month or so I could no longer get in th car at all. I had a walker and a wheelchair.

My wife was a saint and an angel the whole time... encouraging me and taking care of everything.. Tathan, the chores, my medical stuff and my professional stuff. My unit and Squadron was excellent the whole time. At first I didn't tell them what was going on but after my doctor's had misdiagnosed my symptoms and wrote me off as another airman trying to get out of work I was upset. My tests came back showing I had severe osteoporosis and my bones were extremely fragile. One I told my squadron about my problems, my first shirts literally came to my rescue. I will never ever be able to repay all that they did and continue to do for me and my family.

Also my Mom moved in for a few months to help with the house and to boost my spirit. Her company was very valued during this trial. And my Dad and step-mom also came in and helped me with transporation and morale.

I was on muscle relaxers and, after a nasty reaction to Tramadol AKA Ultram, I was on Lortab. (Vicoden)

In Jan 08 I was sent to Eglin for tests. My Dad took me and they said they could not find any growths on my adrenal glands (one of the causes of Cushing's)... and my brain scans were inconclusive. But I do have to say that Eglin Medical is the epitome of AF "Excellence".

In Feb 08 I went to the University of Alabama MedicAL center and they did this weird test where they send tubes through your groin to your brain and take blood or something to figure out IF there is a tumor in your Pituitary Gland and if so, which side.

Well the first time they jacked it up, which they graciously admitted. The second time (which they paid for) they detected the tumor, so my surgeon scheduled me for surgery... which by the way on the MORNING of my surgery TRICARE had not agreed to pay for but my First Sgt. saved the day again and fixed it within the hour.

After the surgery I thought everything would be back to normal but that didn't happen... instead I was in so much pain I was barely mobile at all. THEN in March I suffered a seizure and had to be hospitalized. After I woke up from my seizure I was in more pain than ever. So they sent me to an inpatient rehab facility run by HealthSouth. They helped me roll over, sit up and start walking again.

All those things you take for granted like getting up to go get a soda or use the bathroom on your own... believe me I am very grateful for.

After my release frm HealthSouth, I was trying to get off steroids to fast and I got really sick. I could barely eat andI started throwing up all day. So I went to the hospital two weekends in a row.

The weekend of April 26 was my birthday and I decided my best present would be to go back to work ... so on May 1st I went back to work with a cane and a profile. I have only stayed home once... the next day!! From being so sore.

On July 8th I returned to the flightline and to AMU Physical Training. My current profile says I can't run... (I can only jog for a few minutes before the jarring is too much.) No Sit-Ups (crunches are fine) and I can't lift anything really heavy. About 45 pounds is my limit. I am working and fixing planes everyday.

I am off all drugs and medications... I take Tylenol maybe 3x a week. I am taking vitamins and supplements like Calcium and Glucosamine and MSM. I did try stopping my Cortef completely, but I started getting really tired and very itchy skin and more aches. So I am taking it again.

The AF Informal Physical Evaluation Board returned a decision to Temp Retire me for 15 months with 100 percent pay and benefits with a Re-Eval in 15 months. But I am appealing it on principle. I can fix jets right now with no problems so I might as well do my job the taxpayers pay me to do instead of have a free vacation.

Stay tuned? and any questions ask me :


Thursday, September 25, 2008

Dual bronchial carcinoids and Cushing's syndrome with a paradoxical response to dexamethasone and a false positive outcome of inferior petrosal sinus sampling

DOI: 10.1530/EJE-08-0385
European Journal of Endocrinology, Vol 159, Issue 4, 483-488
Copyright © 2008 by European Society of Endocrinology


Dual bronchial carcinoids and Cushing's syndrome with a paradoxical response to dexamethasone and a false positive outcome of inferior petrosal sinus sampling

Pia Burman, ÅsaLinda Lethagen, Krasnodar Ivancev, Leif Johansson and Anders Sundin

Departments of Endocrinology , Radiology Pathology, University Hospital MAS, SE-205 02 Malmö, Sweden4 Department of Diagnostic Radiology, University Hospital, Uppsala, Sweden

(Correspondence should be addressed to P Burman; Email:

Context: Establishing the cause of Cushing's syndrome (CS) can be a considerable challenge, in particular in ectopic adrenocorticotropic hormone (ACTH) syndrome, and often requires a combination of biochemical tests and imaging procedures.

Subject: A 27-year-old man presented with signs of CS. P-ACTH levels were three times above the upper limit of normal (ULN) and free urinary cortisol around 2000 nmol/24 h. The work-up showed remarkable results.

Results: A 2-day low-dose dexamethasone suppression test demonstrated paradoxical increases in cortisol. Sampling from the bilateral inferior petrosal sinus sampling (BIPSS) showed a central to peripheral ACTH ratio of 4.7 after corticotrophin-releasing hormone (CRH) stimulation, i.e. indicated pituitary disease, but magnetic resonance imaging of the pituitary was normal. Computed tomography (CT) scan of the lungs showed two oval-shaped masses, 1.3x1.8 and 1.3x2 cm, in the middle lobe. Both were positive at somatostatin receptor scintigraphy, compatible with tumors or inflammatory lesions. Subsequently, 11C-5-hydroxytryptophan-PET showed distinct uptake in the tumors but not elsewhere. Two carcinoids situated 3 cm apart, both staining for ACTH, were removed at surgery.

Conclusion: This unique case with dual bronchial carcinoids inducing hypercortisolism illustrates the problems with identifying the source of ACTH in CS. Possibly, an abnormal regulation of ACTH production in response to dexamethasone, or steroid-induced tumor necrosis, explains the paradoxical outcome at dexamethasone suppression, and the false positive result at BIPSS reflects an unusual sensitivity of the pituitary corticotrophs to CRH in this patient. The work-up illustrates the great value of 11C-5-hydroxytryptophan-PET as a diagnostic procedure when other investigations have produced ambiguous results.

Wednesday, September 24, 2008

Amateur Bot-ann-ist: Cushing's Disease

Amateur Bot-ann-ist: Cushing's Disease:
"Not sure if I have mentioned here that I have Cushing's Disease. The tumor was found a year ago, but it wasn't large or dangerous enough to be removed back then. In the last year, it has done some odd and horrible things. (My health has made it nearly impossible to garden so currently I am weaving on a lap loom.) This week I will be checking in with the doctor again, and we will be looking into what to do now. This will involve more tests to get an accurate picture of the situation.
Pictured here is my Cushing's belly. This year I gained a lot of weight, then I lost about 15 pounds, but my belly continued to grow during this. In the last few weeks it has grown quite a bit and now it seems to have taken on a life of its own. I am getting worse almost every day. (The other night I had yellow jaundice circles on the skin around my eyes. If you have ever wondered what jaundice looks like, think, chicken fat.) When combined with an autoimmune disease like hereditary angioedema it really is hell-like. At least I have some new shoes, if only I felt like moving."

The Best Day of My Life

I got this from a book I've been reading (Chicken Soup for the Surviving Soul: 101 Healing Stories About Those Who Have Survived Cancer) . On vacation I read a bit each morning and it really helped me with my mind-set. I should get back to reading this!

The Best Day of My Life

George M. Lousig-Nont, Ph.D.

Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

Today I am going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and yes, even the hardships because they have served to make me stronger.

I will go through this day with my head held high and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know. Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me. I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty oh the stars and the moon, and I will praise God for these magnificent treasures.

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of contented child, excited with expectation because I know tomorrow is going to be the best day of my life, ever!

Diabetes - The 6 Points That Will Explain it to You - Diabetes Information And Tips

Diabetes - The 6 Points That Will Explain it to You - Diabetes Information And Tips:
"2. Causes of Diabetes Mellitus
Diabetes is caused by resistance to, or deficient production of, the hormone insulin, which helps glucose move from the blood into the cells.

In type 1 immune mediated diabetes, pancreatic beta cell destruction results in failure to release insulin and ineffective transport of glucose. There is no known cause for idiopathic diabetes.
In type 2 diabetes, the beta cells release insulin but, receptors are insulin resistant and glucose transport is variable and inefficient. Some people may have conditions that can cause diabetes, such as Cushing's syndrome, pancreatitis or liver disease."

Thursday, September 18, 2008

Tangents: Secondary Hypertension

Tangents: Secondary Hypertension:

"Who are we worried about?
1. severe hypertension, or hypertension very refractory to treatment
2. onset of hypertension in those less than 30 years old (with no family history or obesity)
3. stable blood pressure values that acutely rise
4. onset of hypertension before puberty

What are some of the secondary causes of hypertension?
-Renal disease: virtually any cause
-Pheochromocytoma: remember to screen for MEN IIa and IIb
-Hyperaldosteronism: may have associated hypokalemia
-Cushing's syndrome: hypercortisolemia from any source
-Sleep apnea: zzzzzzz
-Medications: OCP, HRT, some NSAIDS, some antidepressants (eg Venlafaxine)
-Coarctation of the aorta

Canadian Hypertension Guidelines:"

Wednesday, September 17, 2008

Medical therapy of pituitary adenomas: Effects on tumor shrinkage

Medical therapy of pituitary adenomas: Effects on tumor shrinkage

Journal Reviews in Endocrine & Metabolic Disorders

Publisher Springer Netherlands
ISSN 1389-9155 (Print) 1573-2606 (Online)
DOI 10.1007/s11154-008-9107-z
Subject Collection Medicine
SpringerLink Date Saturday, September 13, 2008

Annamaria Colao1 Contact Information, Rosario Pivonello, Carolina Di Somma, Silvia Savastano, Ludovica F. S. Grasso and Gaetano Lombardi
(1) Department of Molecular & Clinical Endocrinology and Oncology, “Federico II” University of Naples, via S. Pansini 5, 80131 Naples, Italy

Published online: 13 September 2008

Abstract The efficacy of dopamine-agonists (DA) in patients with prolactinomas and that of somatostatin analogues (SSA) in those with GH- and TSH-secreting adenomas is well established. More recently, data are accumulating suggesting a potential therapeutic role of DA also in patients with ACTH-secreting and clinically non-functioning (NFA) pituitary adenomas.

This review aims at summarizing published results of DA and SSA on tumor shrinkage in patients with different histotypes of pituitary adenomas. Results of tumor shrinkage are of clinical relevance as tumor size is the one of the most important determinant of surgical outcome. While reduction of tumor size more than 50% of baseline size in macroprolactinomas treated with DA is a frequent finding in patients with GH-secreting adenomas treated with SSA tumor shrinkage only recently is becoming frequent thanks to the availability of depot formulations. Data on tumor shrinkage in patients with TSH-secreting adenomas treated with SSA are limited because of the rarity of these tumors. Very recently, DA have been reported of some efficacy also in patients with ACTH-secreting adenomas but data are still very limited. NFA respond very scantly to both DA and SSA even if receptors targeting these drugs are present. Whether this is due to limited receptor number or alterations of post-receptor pathway is still unknown.

Keywords GH - PRL - ACTH - TSH - Pituitary tumors - Somatostatin - Dopamine

Tuesday, September 16, 2008

My 37-year-old daughter has Addison's disease.


DEAR DR. DONOHUE: My 37-year-old daughter has Addison's disease. Many doctors saw her when she was hospitalized a year ago. She had to go back to the hospital because of stomach upset, back pain and dehydration. Her skin has darkened. She was told she would be fine after she started steroids. This hasn't happened. She is constantly sick. Do you have any good news? -- L.K.

ANSWER: With Addison's disease, the adrenal glands have stopped producing their many hormones. Those hormones include cortisone and aldosterone. Cortisone gives us energy, combats inflammation and figures into many of the body's most important functions. Aldosterone is essential for blood pressure maintenance. Without adrenal gland hormones, the skin darkens, especially the elbow skin and the creases in the hands.

Treatment is straightforward: Replace the missing hormones. Maybe the dosage of her hormone medicines needs revision. If she's hasn't shortly turned the corner, she should get a second opinion from an endocrinologist, a specialist in this kind of illness.

Fluid Electrolyte Chart


If you cannot see the whole chart, view it here.


Sunday, September 14, 2008

tail_eats_cat: Ahhk. I guess it's time for me to write,

tail_eats_cat: Ahhk. I guess it's time for me to write,:
"I'm not too nervous about the visit -- cautiously optimistic, I guess. Part of me is worried that I'll walk in and they'll repeat exactly what my old(current) doc did --- and I don't want to go that route again. I know it isn't a simple case of hypothyroidism - and I am not about to go back on Synthroid. I stopped taking birth control, which will allow for an important test to be done that will bring me closer to a Cushing's diagnosis....... but damn, I don't even know anymore. I know my adrenals are enlarged, my thyroid is enlarged, my cortisol is high, and I have a list of symptoms that can fit several different diseases -- one of which I've already been diagnosed with. I just can't let myself sink - and I know I'm resourceful enough to do my own research, and I hope I'm stable enough to not jump to conclusions and give a self-diagnosis.... which is very easy for me to do. Breatheeee...e.e.e.e."

Beyond Kidney Cancer: New Treatments Bring Hope

CME :: Beyond Kidney Cancer: New Treatments Bring Hope

Discovery Health Program on Kidney Cancer, first aired September 14, 2008, 9AM eastern

Saturday, September 13, 2008

Kevin Ee: 5 Surprising Reasons Why You're Gaining Weight

Kevin Ee: 5 Surprising Reasons Why You're Gaining Weight:
"4. You May Be Gaining Weight Because of a Medical Condition
The most common medical condition that causes weight gain is hypothyroidism. A deficiency of thyroid hormone can decrease metabolism, causing appetite loss and weight gain.

If you are feeling fatigued, lethargic, swelling, hoarse voice, intolerance to cold, sleeping too much, or headaches, you should see your doctor for an easy test to determine if you have hypothyroidism.
Much rarer is a condition known as Cushing's syndrome -- a disorder caused by an excess of the hormone cortisol -- that can also result in weight gain."

Friday, September 12, 2008

And now...CATS!


By Audrey Frederick

It is a disease named after a neurosurgeon who first described this disease in humans about 100 years ago. Cushing's disease is a disorder of the adrenal glands, a pair of bean shaped structures sitting just above the kidneys.

These glands like other glands in the feline endocrine system manufacture and secrete hormones directly into the bloodstream that facilitate and regulate a bunch of bodily processes.

Of the many hormones that are secreted, one of the most important ones is a hormone called "cortisol" - a hormone that is involved with the metabolism of carbohydrates, fats and proteins. It also helps maintain normal blood sugar levels, muscle development and many of the other things related to tissue growth and repair.

And if that is not enough cortisol also is essential in an animal's "fight-or-flight" response. In stressful situations, the adrenal glands bring additional cortisol into the bloodstream, which in turn releases stored energy, that is in the body to help a cat cope with the situation it is in. It can also help fight infection in the case of sickness or surgery.

Since this hormone is of such importance to a cat's system, it needs to be controlled in a proper manner as is flows through the cat's system. An excess of this hormone can be very dangerous for a cat. An excess can cause the cat's body not to metabolize nutrients properly, diminish cardiovascular efficiency, reduces muscle strength, interferes with normal blood-clotting functions and hurts the body's ability to ward off infection.

What are the symptoms of Cushing's disease? A cat with Cushing's disease may show an increase in thirst, increased appetite, excessive urination, a potbelly and its skin may bruise or rupture during routine handling.

You may realize from reading the above that some of the symptoms sound like diabetes and that is true, due to the excess cortisol on the blood-sugar metabolism, up to 90 percent of cats with this disease become diabetic.

Cat's with advanced cases of Cushing's disease may also develop hair loss that tends to show up on both sides of the body or on the inside of the thighs. The areas will not itch (unless there is a skin infection, too) it is just a response to too much cortisol in the body.

This disease usually occurs when cats are middle-aged or older and is usually found more in females than males.

According to the reports that I have read, there are two types of cancers that can cause this disease, one is a small, benign, slow growing tumor in the pituitary gland. It is very small and does not cause any type of neurologic problems for the cat, the only thing it does is create an over abundance of adrenocorticotropic hormone, (ACHT) which in turn tells the adrenal glands to produce more cortisol. As a result the adrenal gland will get bigger because of all the exercise (just like a muscle will.)

This condition is called pituitary-Cushing's disease and is believed to be the cause of 80 percent of the cases of this disease.

The other 20 percent of cases are caused by cancerous growths on one or both of the adrenal glands, which causes the gland to become enlarged and thus produces excess cortisol. This type of cancer has a 50-50 chance of being benign or malignant. If it is malignant chances, are it will spread to the lymph nodes or the liver and other vital organs.

What are the treatment options? First of all the disease has to be diagnosed. This is done by having a complete blood count, a blood chemistry panel, urinalysis and a few other tests done.

If Cushing's disease is diagnosed, treatment may involve drugs that will selectively destroy part of the adrenal gland that is producing too much cortisol. Drugs seem to work much better on dogs with this condition than on cats. Unfortunately surgery is usually the answer for cats.

Since the pituitary tumors are too difficult to remove, the alternative is to remove one or both of the adrenal glands. This surgery requires extensive postoperative care. The surgery will only work if the cancer has not spread to any other parts of the body.

The prognosis for survival is quite good, although cats having this surgery will have to be on medication for the rest of their lives and must have tests several times a year to evaluate their condition. Diabetic cats must have their blood chemistry, water consumption and urine output monitored frequently.

Thursday, September 11, 2008

Dogs, again


Quick Fixes Can Lead to Long-Term Problems

Thursday, September 11, 2008; Page PG22

Dear Dr. Fox:

In response to J.S. [Animal Doctor, June 15], who has a dog with severe allergies, I also had two dogs with allergies.

My Australian terrier had severe allergies and skin sores most of her life. While helping a friend take her cat to the vet, I heard the vet say that some animals are allergic to their feeding bowls. He recommended stainless steel or glass, and nothing else. I figured it was worth trying and changed the bowls. Within a month, the sores had disappeared. She lived to be 18.

My poodle also had allergies, scratching and chewing his paws all day. His vet recommended a total change of diet. For six months, I fed him a mix of lentils and sweet potatoes, and he was free of allergies his entire life.


Falls Church

Many thanks for your advice on treating severe and chronic allergies in dogs. Allergies indicate a disrupted immune system, and finding the causes can take a lot of detective work.

Yes, nonplastic food and water bowls, ideally ceramic or stainless steel, should be used for dogs and cats.

The quick fix for allergies is to put the animals on steroids. They alleviate the symptoms and provide short-term relief for animals that are scratching and chewing themselves raw and bloody.

But often, when the medication has tapered off, the symptoms reappear, and the animals are put back on corticosteroids, which can lead to cystitis and diabetes in cats and other health problems in dogs, notably Cushing's disease. This is increasingly common in dogs and occurs when adrenal glands become hyperactive as a result of prolonged use of corticosteroids. Afflicted dogs might look obese, have thinning coats, experience muscular weakness, become potbellied and lethargic and show increased thirst and urination. Secondary bacterial infections and poor wound healing are also common.

My advice to all pet owners is to avoid long-term steroid treatments when allergies are suspected or diagnosed and to try find the root causes.

I have bitten off more than I can chew

I was already exhausted, for the last 25-odd years. Then I accepted this temporary part-time job of assistant music director at my church...and we got a puppy who is just 15 weeks old.

Over vacation I fell way behind in the Cushing's bios and the new Helpful Doctors and I don't think I'll ever catch up with it all. 

I had forgotten that I signed up for twice weekly water aerobics and that starts Tuesday.

I don't think I'll ever get everything done.

Wednesday, September 10, 2008

All Cushing's Help Board Members again...


Google Cushing's Alerts

--October 16 going to Dr. F
During this last year have increased Cushings symptoms: gained weight mainly in stomach, losing hair, inability to sleep. Diagosed now with Steroid Induced Cushings and Debilitating Vertigo. At a major crossroads. ...
From the Cushing's Help and Support... -

Vote for ME for President
By MaryO(MaryO)
Who knew I'd run on the Cushie Ticket? Vote for me here.
Cushing's & Cancer -

It’s not our fault , says Dr. Rob....
By Robin(Robin)
Look at one physician's experience as a patient: Dr. Wes: Part I, Metamorphosis Dr. Wes: Part II, Access Dr. Wes: Part III, The Opportunity. For more help with Cushing's, visit
survive the journey -

Do I Really Want to Find A New Endocrinologist?
By Kristin
Ok, so I recently moved up to Seattle from Portland. Well, more like three months ago. All the while, keeping the same endocrinologist I’ve been working with since I was diagnosed with Cushing’s syndrome. I’m still on steroids and I’m ...
My Battle With Cushing's Syndrome -

Kalinda Mary9-9-08The newest member of our family! My niece Kimmy ...
By judycolby(judycolby)
Kalinda Mary9-9-08The newest member of our family! My niece Kimmy had her first child yesterday. My oldest sister, Myrna, now joins the ranks of grandma. Kimmy said she reminds her of a glow worm!! I think I hear the makings of a ...
Cushing's Family -

Vote for ME for President

Who knew I'd run on the Cushie Ticket?

Vote for me here.

Monday, September 8, 2008

Kidney Cancer - Causes, Symptoms, Risks Factors and More

Kidney Cancer - Causes, Symptoms, Risks Factors and More:
"...With prompt and appropriate treatment, the kidney cancer mortality rate is fairly low, unfortunately kidney cancer has a tendency to spread early, especially to the lungs, sometimes before symptoms develop. The five year survival rate is around 90-95% for tumors less than 4 cm. For larger tumors confined to the kidney without venous invasion, survival is still relatively good at 80-85%. If it has metastasized to the lymph nodes, the 5-year survival is around 5 % to 15 %. If it has spread metastatically to other organs, the 5-year survival rate is less than 5 %.

An important factor for those with this form of cancer and for that matter with all cancers is that assertive patients who actively work to overcome cancer often increase the odds of survival, live longer, and enjoy life more...."

House Arrest: Stuff and Nonsense

House Arrest: Stuff and Nonsense: "...I might still have an autoimmune disorder but she suspects the main problem is with my pituitary. She sent me for some additional bloodwork -- it was funny because she kept debating about which tests to send me for as she didn't want to go for anything 'unnecessary' as she obviously thought my previous doctor had done -- and I have a follow up on Wednesday. If the stuff for the pituitary shows up, then I get an MRI. If not, we can begin treating the thyroid.

I just feel overall better because a) I feel I was finally listened to as a patient and b) there is an end in sight. I don't know how far away it is, but she assured me that we would get to the bottom of it. She said we would treat each thing one at a time, and that she knew it'd be frustrating for a little bit but that we'd get there...."

Sunday, September 7, 2008

.::path to the inner part of tracyfatfat::.


on de way ther,im even getting myself gulung-ed as if im a sushi roll...face colour totally changed n voice box terkeluar vokal salah...when i arrived,de 1st thing i do is 2 go 2 de toilet...n again u guys noe wad happen again...until my named in called" TRACY WONG SIN YOONG" i slowly walk into de room n sit infront of de doctor...1st thing de doctor asked me "r u dat big size since small??" i wuz like "huh???" thinking*wtf r u trying 2 say???* im so pissed off as im so in pain n u r asking me dis kind of question...mum noes im pissed so she answer bhalf of me..."nono,she is nt! oly since form 2/3" i think de doctor noes im pissed so he said "im sorrie 2 say dat coz i suspect dat u r having a kind of hormmone prob wic is called CUSHING SYNDROME" i wuz like wtf r u talking u expect ur patient 2 understand each word u say??? in a medical term i wuz lke"so in conclusion i was having a terrible diarrhoea 4 de past 2 days n its getting worse each hour min n addition i had terrible stomach stoming in de centre of de stomach too" he said "as wad iv expected, u r having all these wic a person who is suffering frm cushing syndrome has" he explained in detailed wad is cushing i wuz numb as im having all those unusual situation wic a healthy person wouldnt hav...i almost cried bt i i said" wad shud i do nw???" he answered "u need a full body check up in futher n if u r really having it den u would hv 2 prepare urself 4 it.." i terkejut when i heard de word -prepare urself 4 it-! i wuz thinking m i dying very soon?? i wuz even mor scared n didnt noe wad 2 do...he said "gurl dun b 2 scared of it,wad i mean is u wil hav difficulty in having babies in de future if u r planning 2 hav"im released! i tot im going 2 die pulak...i wuz thinking*who cares if i dun get a baby in de future???i dun plan 2 hav any at all...MUAHAHAHHAA"*mum n dad gt so worried 4 me as it is a serious matter if a gurl is nt getting pregnant...i understand hw dey feel bt nothing 4 me...haha doctor den said"due 2 ur current condition,it would b better if u could get a full body check up n treat it asap..if it is very serious den it would lead 2 certain 4 ur condition,i would say it is quite serious ,it is dangerous if it is too serious n it might cause death!" i wuz so worried n i couldnt get into slip n rest myself 4 later...promised dear n gang 2 hv our usual group study..exam jus started n im getting myself sick...haizz..till nw im stil in pain...below r de explaination of de sickness dat i might kena / already kena...

Symptoms include rapid weight gain, particularly of the trunk and face with sparing of the limbs (central obesity), a round face often referred to as a "moon face," excess sweating, telangiectasia (dilation of capillaries), thinning of the skin (which causes easy bruising) and other mucous membranes, purple or red striae (the weight gain in Cushing's stretches the skin, which is thin and weakened, causing it to hemorrhage) on the trunk, buttocks, arms, legs or breasts, proximal muscle weakness (hips, shoulders), and hirsutism (facial male-pattern hair growth). A common sign is the growth of fat pads along the collar bone and on the back of the neck (buffalo hump) (known as a lipodystrophy). The excess cortisol may also affect other endocrine systems and cause, for example, insomnia, reduced libido, impotence, amenorrhoea and infertility. Patients frequently suffer various psychological disturbances, ranging from euphoria to psychosis. Depression and anxiety are also common.[2]
Other signs include polyuria (and accompanying polydipsia), persistent hypertension (due to cortisol's enhancement of epinephrine's vasoconstrictive effect) and insulin resistance (especially common in ectopic ACTH production), leading to hyperglycemia (high blood sugar) which can lead to diabetes mellitus. Untreated Cushing's syndrome can lead to heart disease and increased mortality. Cushing's syndrome due to excess ACTH may also result in hyperpigmentation. This is due to Melanocyte-Stimulating Hormone production as a byproduct of ACTH synthesis from Proopiomelanocortin (POMC). Cortisol can also exhibit mineralcorticoid activity in high concentrations, worsening the hypertension and leading to hypokalemia (common in ectopic ACTH secretion). Furthermore, gastrointestinal disturbances, opportunistic infections and impaired wound healing (cortisol is a stress hormone, so it depresses the immune and inflammatory responses). Osteoporosis is also an issue in Cushing's Syndrome since, as mentioned before, cortisol evokes a stress-like response. The body's maintenance of bone (and other tissues) is therefore no longer one of its main priorities, so to speak. It is also important to note that Cushing's may elicit hirsuitism (male-pattern hair growth in a female) and oligomenorrhea (decreased frequency of menstruation) due to elevations in androgens (male sex hormones), normally at low levels in women.
The syndrome in horses leads to weight loss, polyuria and polydipsia and may cause laminitis.

Beautiful Barbados

Beautiful Barbados:
..."About 11:30 we arrived home, exhausted and achy from too much airplane sitting. But, we're here!"...

Life happens...: Busy, busy, buys.

Life happens...: Busy, busy, buys.:
..."Okay, I will have to make this quick, I really need to head to bed. Lots has happened in the past few days. We finally got the results back for Joshua's growth hormone stimulation test. It showed that his growth hormone levels are fine but that he is producing to much Cortisol which the doctor said that if the body produces to much that it can also inhibit growth. She than said to make another appointment in November to see if he has made any progress, if not she said she was going to have him start receiving growth hormone therapy. Well, I will need to call the doctor back because all the research I have done for the Cortisol in toddlers came back for either Cushing's Disease or a tumor. Hopefully this can get resolved soon, pray!"...

Saturday, September 6, 2008

dvs_taz's Blog : So, How Did I Get Here?

dvs_taz's Blog : So, How Did I Get Here?:
..."Two years ago I had a tumor removed from my pituitary gland. It caused a disease called Cushing's Disease and it almost killed me. It also packed pound after pound of fat onto my body. So I survived the disease and I'm now trying to deal with the aftermath."...

Tuesday, September 2, 2008

Beautiful Barbados

Beautiful Barbados: "Whether it was the pounding rain or the nagging reminder that I hadn't yet written the post about the races, I woke up very early this morning. I guess the rain was a part of one of the hurricanes that are out at sea somewhere - Hanna or Ike. Gustav had already been past Cuba and headed towards New Orleans. Maybe it was just rain.

Anyway, I woke up early and wrote my last blog entry. When I went online to upload it, I found that my hacked site and my 2 sites with the error messages were back up thanks to the hosting company. WooHoo! That takes a lot off my mind."