Saturday, August 30, 2008

Hackers again

I think I'm about done with these php driven sites like Joomla and such.  Hackers got the site  I don't know when for sure so I don't know what database to have restored.  At least I was finally able to shut the site down so people don't see the garbage that was put up.  That took some doing by copying files from a "good" site of mine and uploading to the bad one.  But the site doesn't work :(

Of course, it's a Saturday morning, a holiday weekend and I'm out of the country.  I'm getting canned responses from my hosting company.  IF I can figure out which database to restore, I can't do that myself - they have to do it for me.

Always something!

Wednesday, August 27, 2008

The molecule that kills kidney cancer cells


28 Aug 2008

Kidney cancer patients generally have one option for beating their disease: surgery to remove the organ.

But that could change, thanks to a new molecule found by Stanford University School of Medicine researchers that kills kidney cancer cells. Ideally, the researchers said, a drug created from this molecule would help fight the life-threatening disease while leaving patients’ kidneys intact.

“You now have a potential means of going after a disease that’s been difficult to treat,” said Amato Giaccia, PhD, professor and director of radiation oncology and radiation biology at the medical school. His findings are published in the journal Cancer Cell on July 8.

Giaccia said his lab focused on renal cell carcinoma, or kidney cancer, because there is no known cure for it short of removing a damaged kidney from a patient’s body. “There is no effective chemotherapy to treat renal cell carcinoma,” said Giaccia, also a researcher at the Stanford Cancer Center. “Patients still succumb.”

Almost 54,400 people in the United States will be diagnosed with kidney cancer this year, and about 13,000 will die from the disease, according to the American Cancer Society. Radiotherapy, a powerful weapon used to fight cancer, has also proven to be ineffective in killing kidney cancer, in contrast to other types of cancer, Giaccia said.

This new research could lead to a treatment to save patients from losing one of their two kidneys. The organs are responsible for filtering blood, controlling blood pressure and preventing anaemia, among other tasks.

Giaccia’s work focuses on the von Hippel-Lindau tumour suppressor gene, or VHL gene, which normally slows tumour growth in humans but does not work in 75 percent of kidney tumour cells. Giaccia’s team searched for a small molecule that would kill cancer cells when this VHL gene is broken. They found their weapon in a molecule called STF-62247.

While STF-62247 is toxic to kidney cancer, it is generally harmless to most other cells in the human body, as they carry a working VHL gene, Giaccia said.

As an added benefit, Giaccia said, patients treated with STF-62247 should not suffer some of chemotherapy’s infamous side effects, like nausea and hair loss, because STF-62247 is not toxic to the entire body.

Clinical trials could begin “in the next couple years,” Giaccia said.

Stanford co-author and postdoctoral fellow Denise A. Chan, PhD, said she believed the new findings could affect how all types of cancer are treated in the future.

This study is one of the first to identify a trait unique to a certain form of cancer—in this case, kidney cancer’s deficient VHL gene—and exploit it to defeat the disease, Chan said. She predicted other scientists soon would follow suit, looking for characteristics in other cancers that also could be manipulated. 

Researchers’ motivation could be twofold, the study’s authors said: to find cures for deadly cancers, and to rein in the debilitating side effects caused by many current cancer treatments.
“These results can be extended far beyond kidney cancer,” Chan said. 

The findings also speak well for Stanford’s High-Throughput BioScience Center, which opened in 2004. The results of this study are some of the first using the centre’s equipment.
The high-throughput equipment at Stanford can analyse thousands of molecules for their cytotoxicity at the same time, allowing researchers like those in Giaccia’s lab to search for hidden genes and molecules that previously would have been quite laborious to find.

Without the centre, “This work would not have been possible,” said Stanford co-author Patrick Sutphin, MD. The findings have special significance for Sutphin, who worked with the Stanford team before moving on to his internship in medicine at Massachusetts General Hospital in Boston. In 1995, when Sutphin was a sophomore in college, his grandfather was diagnosed with kidney cancer and died three months later, he said.

The experience of losing his grandfather to kidney cancer helped motivate Sutphin to study the disease. His hope, Sutphin said, “Is that one day our collective research will result in new drugs that are more effective than traditional drugs, and without the toxic side effects.”

(Source: Cancer Cell: Stanford School of Medicine: August 2008)

Beautiful Barbados

Beautiful Barbados:
"...I had some trouble getting to sleep last night. It was a little warmer and my sunburn is getting a bit itchy so I tossed and turned for awhile. At some point, I noticed a pain/pressure in my chest. It feels sort of how I would imagine it if my lung got pinched in my ribs. Not a big pain but there. That led me to thinking about my cancer and the possibility that it metastasized to my lungs. Oh, joy. I started trying to think about where my lung nodules but couldn't remember. I think I have a CT scan in my future!..."

Monday, August 25, 2008

Beautiful Barbados

Beautiful Barbados:
"Monday, week one
Monday, August 25, 2008

Of course yesterday didn't go as planned. After much haggling with his wi-fi in the lobby, Tom got a network cable from the front desk. The rest of the afternoon he was online or making phone calls.

I spent the time dipping in the pool, reading, napping. I did something I have never done here - I got a sunburn! The weather was so breezy and cool and I was out in my bathing suit. It never occurred to me I might get a burn."

Read the rest of this post here

Sunday, August 24, 2008

We're here in Barbados!


Our cab yesterday was for 5:30 so it was a very early start. Everything went smoothly, though. Not a long layover in Charlotte, either, which was good. I got a small nap on the second plane and I was surprised when we started the descent nearly an hour before our published time of arrival.

Customs and Immigration were faster than normal, too, but the rental car was slower. We had a reservation for a couple of months. Until this year, someone with a placard with our name would meet us right outside. We'd give him the credit card, get our car and go.

Now, in an effort to "modernize" I guess, they have an indoor office like they do at other airports and you have to wait in line with others including those who have no reservation at all. Oh well - "no problem, man".

In the Crane lobby we got to give Theresa a big hug and talk a little to Paul. If I were him, I'd avoid check-in days like the plague.

After we got here and unpacked a little we went grocery shopping at Emerald City. That's so much closer than when we had to go to the JulieN. I got my beloved salt bread (it was commercial, though. It was too later for homemade. Drat!) and a bit of rum punch. I'm so glad to see that Tutti Fruitti milk is still here. I have always loved it but 2 years ago they didn't have it anymore. There were even articles in the newspaper about not having it. That and vanilla milk are 2 long time favorites here.

Tom realized he didn't bring a network cable so he can't go online with his laptop in the room. I didn't bring one because I don't need one. So, I imagine we'll be on a mission to buy one of those here. I imagine when we go to SuperCenter in Warrens later today they'll have one.

He went over to the lobby to check his mail and I fell asleep by the pool. I was exhausted. We had a very easy, fast dinner and I was heading to bed by about 9PM. I went out to say goodnight to Tom and he had fallen asleep while channel surfing LOL

I didn't wake up until around 8AM. Tom was already reading, of course, and had made coffee (YEA!). I debated going back to sleep but got up anyway. Tom's at his regular Sunday morning meeting in Six Roads. I'm sure the woman with the coconut bread will be there and Tom will come home with a loaf. Tradition!

After that, off to SuperCenter for stuff we forgot yesterday and that cable. They're the only store open on Sundays here. Then maybe, finally (finally? we're only been here less than 24 hours LOL) we'll go in the pool. Or I could go now...

Friday, August 22, 2008

Woman suffers from Lyme disease - Chambersburg Public Opinion

Woman suffers from Lyme disease - Chambersburg Public Opinion:
"...Lyme disease has historically been a difficult illness to diagnose.

When left untreated, it may affect the heart, nervous system and joints and cause arthritis and cognitive problems.

Three years ago, Kathleen Angotti of Chambersburg was suffering from fatigue, muscle pains and headaches. She started having tremors and memory loss.

Although she was being treated for Cushing's disease at the time, the then 21-year-old continued to have those other symptoms...."

Almost ready to head out first thing in the morning

I'm almost ready to go on out trip...except for some laundry, all the packing, watering the plants, delivering Mimi to her sister's house...

How can I be almost ready? I'm not packing much, and all the web work is done, files copied to a SD card, bills are paid, forms notarized and delivered to work, puppy treats bought to take with Mimi, meds picked up, Michael's bound dissertation delivered to Mom, computer program delivered to a friend, last night's podcast uploaded to iTunes.

I'll be online some and I'll be back in 2 weeks. Check out my Barbados Blog if you want to see what we're up to.

So, I can now take a nap!

survive the journey

survive the journey:
"Health online radio shows and pituitary internet talk radio by CushingsHelp | BlogTalkRadio
Health online radio shows and pituitary internet talk radio by CushingsHelp | BlogTalkRadio

MaryO and Robin discuss doctor blogs and 'Cushie'blogs. Dr. Rob, are your ears burning? ;) I bet Zippy's are! They are red, anyhow...ha!

The Cushing's Help blogtalkradio show has over 6000 listeners on blogtalk alone. The shows are also uploaded to iTunes and have a large following there, too."

Thursday, August 21, 2008

Kidney Cancer News

"NEW YORK AUG 21, 2008 (Reuters Health) - Being active during adolescence and in adulthood appears to reduce the likelihood of developing kidney cancer later in life, a study shows.

Dr. Steven C. Moore of the National Cancer Institute in Bethesda, Maryland and colleagues analyzed data on nearly half a million people aged 50 to 71 who responded to a survey about their diet and level of physical activity, currently and in their teen years.

The study collected reports on how often during the previous year participants obtained 20 minutes of strenuous exercise; their current level of sitting, walking, standing, climbing stairs and doing heavy work during routine daily activities; and the physical activities they engaged in when 15 to 18 years old."


I'm finally caught on the Cushing's web site work, the bios, new/updated doctors, podcasts, guest speakers. I just have some bracelets to get sent out and that's it before vacation.

Now I have to tackle the packing, paperwork for the new job (and notarize/deliver that) pick up the meds for the UTI... I still don't have them yet. The infection is probably raging through my body by now.

The puppy is taking more out of me than I thought, energywise. And I hate to leave her home alone (in her crate) for too long so I'm putting off the outside errands but I'm running out of time. Our plane leaves at 7 AM Saturday so I don't have any of that day to accomplish anything, just today and tomorrow.

But the Cushing's work is done - for now. Whew!

Wednesday, August 20, 2008

Sunday, August 17, 2008

Dr. Gott: Is prednisone causing heart trouble?


Dear Dr. Gott: What are some of the side effects of prednisone or an overdose of it? My elderly dad (age 82) is in fairly healthy. He came down with a cold a few months ago. He saw his doctor, who prescribed prednisone, two pills by mouth four times a day for five days. After taking it for four days, he became delirious and nearly lost consciousness. He went back to the doctor who simply said, “Oh, yeah.”

My father seems to be tired a lot, has very little energy and is short of breath. He is seeing a heart specialist, who diagnosed him with a fibrillating heart. He never had heart problems before the prednisone.

Dear Reader: Prednisone is an oral corticosteroid and is not an appropriate treatment option for trivial colds. It can, however, be given for severe bronchitis, pneumonia, asthma, arthritis and other inflammatory conditions.

Prednisone has many side effects, including muscle weakness, potassium loss, high-blood pressure, thin skin, headache, seizure, adrenal unresponsiveness, glaucoma, congestive heart failure and more. Of these, both low potassium and high-blood pressure can be associated with heart rhythm abnormalities such as your father’s atrial fibrillation. This is NOT to say that his symptoms and difficulties are due to the prednisone, but they may be the result of one of the side effects.

Atrial fibrillation simply means that the heart is not beating normally. He has appropriately seen a cardiologist – the best resource in this situation. While you did not mention it, I assume that your father is on treatment to reduce his cholesterol (if it is too high), and lower his blood pressure and using an anticoagulant, such as warfarin or aspirin, to reduce the chance of clots, heart attack and stroke.

I cannot say if your father’s heart problems are directly related to the prednisone.

I should also mention that prednisone can cause the adrenal glands, which produce natural corticosteroids, to slow or stop production, leading to symptoms of adrenal failure. To prevent this frightening, uncomfortable and potentially serious consequence, prednisone taken for more than three or four days should be tapered off slowly until the medication is stopped or a maintenance dose can be reached (such as for fibromyalgia, lupus and others).

Friday, August 15, 2008

A Week from Tomorrow, etc.

We're finally going on vacation. Although I don't technically have a "job" I do work hard on my Cushing's sites and other blogs.

I've been stressing lately about taking that assistant music director's job. I finally decided I would and that I'd pray hard that they would get a new music director and I'd be "unemployed" again. i still don't know for sure if I can handle this job. Friends say I can't, hubby says I can (or should be able to!)

The job application came today and I filled out it but it made it seem somehow more real than volunteering.

Then, there's the puppy to be considered. I know she will take time and energy that I already seem to have a deficiency in. But she's so darn cute!

So, I'll be glad to get away for a couple weeks before all the chaos starts. Maybe they will have found a new director and I'll always be off the hook. If not, I'll do the best job I can.

The Cushing's stuff will have to slide some more, I guess. I'm already about a week behind in bios; a day behind in getting last night's podcast/iTunes formatted.

I saw my kidney cancer doctor yesterday. That appointment went fairly well but he offered me a "little procedure" to help with an issue I'm having. I said no thanks! I also (temporarily) to meds and will try to deal with this on my own.

He thinks I can go a few more months without a CT scan. This is always good news/bad news to me. I'm always glad not to go for scans but I worry when I don't. What's growing; how fast?

He took a sample and, hopefully, there's nothing in there that shouldn't be.

Oh, for the stress-free life. It's coming a week from tomorrow...

Cushing's: Spread the Word!

I get Google Alerts for "cushing's" as well as several other search terms.

Today's were all our people smile.gif

(Note that the one from the boards cannot be read by anyone who is not logged into the boards)

Google Blogs Alert for: cushing's

Extreme Thirst

Does anyone else suffer from EXTREME thirst? If so how much do you drink per day? What volume did you produce during your UFC's? And do you know why you are so thirsty? I am always thristy!!! All day long, every day, even more so on ...

From the Cushing's Help and Support... -

Pituitary Cancer - What is it - How Do We Treat It | Information ...

By MaryO(MaryO)
Pituitary Cancer - What is it - How Do We Treat It | Information and Resources for Cancer: "Causes Although the exact cause is unknown, a predisposition to Pituitary tumors may be inherited through an autosomal dominant trait. ...
Cushing's & Cancer -

Ouch........that hurts, Dr. Rob....
By Robin(Robin)
Because it made me despair more for those attempting diagnosis and treatment for Cushing's. For anything, really, but this is the cause I have taken on because I have been there. Am there, and will be there. Ask Lisa....she knows: ...
survive the journey -

Tentative Interview with Joselle - Aug 21,2008
She writes in her bio: "I am a 48 year old female recently diagnosed with Cushing's...
Disease caused by a pituitary adenoma. It's taken a few years to finally come to this diagnosis. I had a series of symptoms which were indicative of a
CushingsHelp -

Pituitary Cancer - What is it - How Do We Treat It | Information and Resources for Cancer

Pituitary Cancer - What is it - How Do We Treat It | Information and Resources for Cancer:

Although the exact cause is unknown, a predisposition to Pituitary tumors may be inherited through an autosomal dominant trait. Chromophobe adenoma may be associated with production of corticotrophin, melanocyte stimulating hormone, growth hormone and prolactin. Basophil adenoma with excess corticotrophin production and consequently with Cushing’s syndrome. Eosinophil adenoma with excessive growth hormone production.

Signs and Symptoms
As pituitary tumors grow they replace normal glandular tissue and enlarge the tissue that house the pituitary gland (sella turcica). The resulting pressure on adjacent intracranial structures produces the following typical symptoms: frontal headaches, vision problems, personality changes or dementia, seizures, head tilting and dizziness, strabismus, nystagmus, nausea and vomiting, or any of the problems caused by the production of too many hormones such as infertility or loss of menstrual periods in women, abnormal growth, high blood pressure, heat or cold intolerance, and other skin and body changes."

Wednesday, August 13, 2008

Decisions, Decisions, Part 3

It looks like we"re going to get the puppy. The home inspection was Monday and it looks like we passed. We have papers to sign on Sunday then we get her for a week...then go on vacation. Her foster home will take her back while we're away.

Mimi has a blog already but I don't want to jinx things by making it public until we really have her.

Also, I took the job and I'm praying hard that they find a new music director so the acting director goes back to being assistant and I'm "unemployed" again.

It's going to be a busy fall!

Monday, August 11, 2008

Blood and Guts: A History Of Surgery showing on BBC 4 : DigiGuide Forums

Blood and Guts: A History Of Surgery showing on BBC 4 : DigiGuide Forums: "Blood And Guts: A History Of Surgery explores how brilliant surgical breakthroughs, sometimes humorous, often tragic, shaped the evolution of modern medicine. Presented by Michael Mosley, the series brings the past to life through demonstrations, interviews and challenging experiments. Each week, Mosley tackles a different branch of surgery to reveal how it developed.

In the first episode, Mosley investigates the story of brain surgery - the most complex organ. A century ago, cutting into the brain was a terrifying prospect for both patient and surgeon. Harvey Cushing, the so-called 'father of neurosurgery', revolutionised brain surgery. Before him, it was little more than bloody butchery which killed around 70 per cent of patients. Michael travels to Yale University to see Cushing's archive: a collection of more than 1,000 perfectly preserved human brains."

Decisions, decisions, part 2

On Saturday I wrote Cushing's & Cancer: Decisions, decisions: "Although this was not completely unexpected, I have been asked to be the interim assistant music director of my church. Prior to being asked, I had always thought that I would turn this position down immediately but now I find myself thinking about it. I have said that I would call in my decision on Monday so my weekend is cut out for me."

I think I've pretty much decided that I will say no. I actually made the call but got an answering machine. I talked to lots of people about this. Husband said YES, Best friend said that there was no way I would have the energy to do this.

When I woke up this morning, my first thought was "what if I had to go to work today?" and I realized that I couldn't do it, not today, anyway.

When I think about my naps and the little energy I have now... and since then we were looking at a puppy.

If we get her, that will be a further energy drain. But how could we resist this beautiful face?

So, at least until I get the return call, the answer is no.

Sunday, August 10, 2008

Tempestuous ;;

Tempestuous ;;: "Today's Saturday and here I am, in the Pediatrics Emergency Ward with my very last shift!

We had two cases of vomiting yesterday, both with unusual diagnoses.

Sadly, we diagnosed one of them with a brain cancer in a 2 year old boy. The nurses had a gut feeling that 'he just didn't look right'. True enough, when the CAT scan results came back, it showed a tumor in the posterior aspect of his brain. Mum was heavily pregnant with her second baby, and the nurses told each other to keep an eye on her whilst my doctor ahd to break the news to both mum and dad. They were afraid she might go into premature labor.

In that one day by itself, it was a day of interesting unexpected, atypical disorders you rarely ever see.

In that one day, we had a malaria patient, extremely rare over here. A newly diagnosed brain tumor in a 2 year old. An Addison's disease whereby due to lack of a hormone, the patient progressively becomes more bronze/brown in color- but his parents were totally unaware and brushed it off as being tanned easily...! In an 8 hour shift. And of course, the usual cases you see-constipation, lacerations, falls, fevers,etc...

It was so sad. When we all saw the tumor in the poor boy's brain. They were about to leave here for their hometown by plane far away, but that obviously had to be postponed."

Free Medical Videos: Pituitary Brain Tumor

Free Medical Videos: Pituitary Brain Tumor: "Cushing's Disease caused by a pituitary brain tumor.

Labels: Brain tumor, Cushing's disease"

Robin S on Kevin, M.D. - Medical Weblog

Kevin, M.D. - Medical Weblog: "The following is a reader take by Robin S.

“Dr. Google, meet Ms. Cyberchondriac. Ms. Cyberchondriac, meet Dr. Google.” Just about every physician reading this is nodding his/her head. They know what I’m talking about.

Just what is a cyberchondriac? My spell-check in Microsoft Word says it is not a word. Funny, though, it doesn’t say that with “Google” as long as I capitalize it. According to the Merriam-Webster dictionary cyberchondria is – wait a minute – it’s not in the dictionary. So why am I reading it so much in the media where it is the technical equivalent of “hypochondria”?"

Read more

Saturday, August 9, 2008

Decisions, decisions

Although this was not completely unexpected, I have been asked to be the interim assistant music director of my church. Prior to being asked, I had always thought that I would turn this position down immediately but now I find myself thinking about it. I have said that I would call in my decision on Monday so my weekend is cut out for me.

When I did the music camp that wiped me out, that was 15 hours a week plus a couple after-camp meetings. Could I do that every week plus an additional 5 hours sometime during the week?

I already put in quite a few hours during the school year. I currently usually play bells on Sundays (2) and I often sub in a youth group (1), have 2 bell rehearsals on Tuesday (2), have a rehearsal on Wednesday (1), children's handbells and play piano for another group on Thursdays (1.5). That's 7.5 hours already and more than enough to add to the time that music camp was.

Could I, with my nap schedule, pull all that off?

This is a temporary position. When a new music director is hired, the current acting music director will resume her "real" job, which is the one I would be doing. Hopefully, a new permanent director will be hired soon.

My ideal thing would be to say yes, get the prestige, such as it is, of having this job, then they hire someone who starts the beginning of September so I never have to actually do the work.

As a volunteer, I can always say no to coming in for an extra rehearsal. As an "official person", I think I would have less leeway to do that.

I have worked with the acting music director for many years and we work well together.

Other than the schedule above, I can set my own hours.

This job involves emails, computer scheduling, other computer stuff, all of which I can do easily. If there's any recruitment, I don't think I could do that.

The acting music director says that she will help me with repertoire since she is very aware what they have in the library and I don't. I would hate to choose music only to find that that choir had just played the piece in the spring.

I need help deciding - what should I do?

Friday, August 8, 2008

Kidney Cancer Causes, Symptoms, Risk Factors and More


Kidney cancer or renal carcinoma usually occurs in older people and accounts for about 2 to 3 of cancers in adults, affecting about twice as many men as women. In adults, the most common type of kidney tumor is renal cell carcinoma, which begins in the cells that line the small tubes within your kidneys. Kidney cancer rarely strikes children and young adults; the exceptions are a pediatric kidney cancer called Wilms tumor and some forms of hereditary kidney cancer syndromes, such as von Hippel-Lindau disease.

Causes of Kidney Cancer
The causes are not known, however external factors, such as smoking and obesity, have been related to a higher incidence of kidney cancer and changing environmental factors as well as population aging has seen an increase in the presentation of this form of cancer.

Signs and Symptoms
Kidney cancer symptoms are often overlooked because tumours are usually slow growing and not suspected until the patient begins to experience symptoms such as blood in the urine, pain, tiredness and a palpable mass. Since back pain is common among people over 40 years of age, such pain is often ignored and the presence of kidney cancer can go undetected. Kidney cancer may also cause high blood pressure.

Risk Factors
The risk of developing kidney cancer is four times higher if a close relative has had kidney cancer. Being on dialysis for many years is a risk factor for kidney cancer.

People who have had bladder cancer are more likely to develop kidney cancer, and vice versa. About three per cent of kidney cancer patients have inherited a damaged gene that will make it likely the cancer will also be found in their second kidney.

Not smoking is the most effective way to prevent kidney cancer and it is estimated that the elimination of smoking would reduce the rate of renal pelvis cancer by one-half and the rate of renal cell carcinoma by one-third.

Other factors that may decrease the risk of developing kidney cancer include: maintaining a normal body weight, a diet that is high in fruits and vegetables, especially in bananas and root vegetables such as carrots, maintaining normal blood pressure and limited exposure to environmental toxins.

Diagnosing Kidney Cancer
Cancer of the kidney is most commonly detected with either computed tomography CT scan, ultrasound or magnetic resonance imaging MRI. Cystoscopy can rule out associated bladder cancer. Kidney cancer cells may also break away from the original tumor and spread or metastasize to other parts of the body such as the lymph nodes, bones or lungs, with about one third of cases showing metastasis at the time of diagnosis.

Types of Kidney Cancer
Almost 85 of this tumor are renal cell carcinomas. A less common type of kidney is Papillary carcinoma. Other rare kidney cancers include: Renal sarcoma, Collecting Duct carcinoma, Medullary and Chromophobe carcinomas.

Radical nephrectomy with or without the removal of lymph nodes offers the only cure but treatment of kidney cancer may include: surgery, arterial embolization, radiation therapy, biological therapy or chemotherapy depends upon the stage of the disease and the patients overall health.

Nephrectomy or removal of the entire organ including the adrenal gland, adjacent lymph nodes and surrounding normal tissue has been the norm, but recent research shows that removal of just the tumor, produces similar survival rates and offers less chance of subsequent renal failure in selected cases.

Scientists have also isolated the gene responsible for VHL disease, and this discovery offers exciting future possibilities for improved diagnosis and treatment of some kidney cancers. Various combinations of interleukin-2, interferon, and other biologic agents and even vaccines developed from cells removed from the kidney cancer are also being investigated.

Survival Rates
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.

Clinical Trials: Renal Cell Carcinoma

Renal Cell Carcinoma

If you are 18 or older, have histologically or cytologically confirmed renal cell carcinoma, and have failed or are intolerant to one or more previous lines of treatment (which must include a tyrosine kinase inhibitor), you may qualify for this study.

The research site is in Beech Grove, Ind.

More information

Please see

Thursday, August 7, 2008

More on Addison's Disease

DEAR DR. DONOHUE: My daughter is 37 and had been feeling very sick for a couple of months. One doctor put her in the hospital and ran tests, and then sent her home with no answer. She returned to the hospital, had more tests and was finally diagnosed with Addison's disease. Her skin had gotten dark. She was told she would be on steroids for the rest of her life. I've read about steroids and they really scare me, but if she's not treated, she could die. What can you tell me about this? - L.K.

ANSWER: The adrenal glands are small glands. They sit on top of the kidneys. Small as they are, they play a huge role in the body's health. The "steroids" they make are hormones that control inflammation and blood pressure, regulate the balance of sodium and potassium, and direct the metabolism of carbohydrates, fats and proteins. They are not the muscle-building steroids you read about in the sports pages, although the glands do produce a small amount of male hormones in both men and women.

Without adrenal-gland hormones, people become extremely fatigued, lose their appetite and lose weight, develop low blood pressure and often complain of joint and back pain. Their sodium and potassium levels are out of whack. Their skin darkens. Previously, infections of the glands - TB being high on the list - were the chief cause of adrenal-gland failure. Today it's an assault on the gland by the immune system.

You don't have to fear your daughter's taking replacement hormones. She's getting the amount her body needs, not an excess. She won't have any side effects from treatment. Without treatment, her life is in danger.

Dr. Donohue regrets that he is unable to answer individual letters, but he will incorporate them in his column whenever possible. Readers may write him or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853- 6475. Readers may also order health newsletters from

What Does Your Family Know About Addison's Disease?


Hormone: chemical substance that is secreted at one point in the body and conveyed in the blood to regulate the normal body functions of tissues and organs elsewhere in the body.

Addison's disease occurs when the adrenal glands (ductless glands situated on the kidneys) do not produce enough of cortisol (hormone active in carbohydrate and protein metabolism) and, in some cases, the hormone aldosterone. The disease is referred to as adrenal insufficiency, or hypocortisolism. Causes of adrenal insufficiency can be grouped by the way in which they cause the adrenals to produce insufficient cortisol. These are adrenal dysgenesis (the gland has not formed adequately during development), impaired steroidogenesis (the gland is present but is biochemically unable to produce cortisol) or adrenal destruction (disease processes leading to the gland being damaged)

Addison's disease is an endocrine or hormonal disorder that can afflict persons of any age, gender, or ethnicity, but it typically presents in adults between 30 and 50 years of age. Young women are most affected, outnumbering men by a factor of four.

The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and non-exposed parts of the body.


Read the rest of the article at

UK Says Kidney Cancer Drugs Aren’t Worth the Cost

UK Says Kidney Cancer Drugs Aren’t Worth the Cost

Posted by Jacob Goldstein

kidneyIs extending life by a few months worth $50,000? No, says the UK’s National Institute for Health and Clinical Excellence.

In a report out today, the group concluded that several new drugs for advanced kidney cancer aren’t cost-effective.

In the past few years, Pfizer’s Sutent, Wyeth’s Torisel, Nexavar from Onyx and Bayer and Avastin from Roche and Genentech have been shown to slow the progression of kidney cancer and, in some cases, to extend patients’ lives for a few weeks or months on average. (Avastin has been approved in the EU for kidney cancer, but not in the U.S.)

But giving the drugs costs £20,000 to £35,000 (roughly $40,000 to $70,000) per patient per year in England, the Times of London reports.

That high price isn’t worth the benefit conferred by the drugs, NICE concluded, and buying the drugs would force the National Health System to deny patients other treatments that are a better bang for the pound. The cost-effectiveness limit for NICE is £30,000 per good-quality year of life gained, the Times says.

One cancer doctor told the Times the decision was “an outrage” and a “devastating blow to the kidney cancer community.”

Today’s report, a draft guidance, won’t be the final word on the issue. After a meeting later this year, NICE will issue a final ruling. But even that can be challenged in court; Pfizer and Esai recently won on appeal when they challenged NICE’s rejection of the Alzheimer’s drug Aricept.

Kidney via Wikimedia Commons

Too Much

A friend and I were talking yesterday about my compulsion to always be "first". We (actually she) decided that it was because my parents never complemented me and this was my way of somehow being "best"

My counselor and I were also talking yesterday - a big talking day yesterday! - about me hoarding clothes and other stuff and we (actually she) decided that it was because my mother never let me buy new clothes. They always came from rummage sales and were ill-fitting and never my choice. So, today, I buy clothes I like, some I never wear, but I have some control.

Then, there's the Cushie Blogger thing. I couldn't leave it alone. We have the logo, we have the lists at the side of the pages and on the message boards. But there's now also a blog for the blogs. AACCKK

I need to calm down a little. Maybe there's a little OCD there. I don't like adding extra work for myself but I always seem to.

For example adding bios to the Cushing's site would be "enough" but I have to add them to an RSS feed, put them in alphabetical order, listed by type of Cushing's, add them to a list of other bios, put them into a newsletter, add the person's name to the locations list...

No wonder I'm always tired!

Thanks, Robin...

Thanks, Robin for the spiffy new blog logos!

My small one is on the right sidebar but I think this big one is great! Maybe I'll have to keep editing all my posts to insure that this logo is always on the top, newest, post. Ya, right!

I hope that all our Cushie Bloggers will put a logo up on their blogs, too to help spread the word.

I see Robin has hers up on survive the journey, too.

Wednesday, August 6, 2008

Oncology News: Malignant Gliomas in Adults

Oncology News: Malignant Gliomas in Adults:

"Corticosteroids such as dexamethasone are frequently used to treat peritumoral edema. Cushing's syndrome and corticosteroid myopathy may develop in patients who require prolonged treatment with high doses of corticosteroids.

Patients with brain tumors who receive corticosteroids are at increased risk for Pneumocystis jiroveci pneumonitis, and prophylactic antibiotic therapy should be considered,49 although a recent meta-analysis did not show a benefit from this approach.51 As the rate of survival among patients with malignant glioma improves, long-term complications from treatment with corticosteroids, including osteoporosis and compression fractures, are becoming increasingly evident, and preventive measures, such as treatment with vitamin D, calcium supplements, and bisphosphonates, should be considered.

Novel therapies such as corticotropin-releasing factor, bevacizumab (a humanized VEGF monoclonal antibody), and VEGFR inhibitors decrease peritumoral edema and may reduce the need for corticosteroids."

Tuesday, August 5, 2008

internalmdlinx Medical News about Renal Cell Carcinoma

internalmdlinx Medical News about Renal Cell Carcinoma:

"Rare Renal Pseudotumor Associated with Chronic Glomerulonephritis Mimicking Renal Cell Carcinoma"

As cost to treat cancer rises, guidelines lend a helping hand - Pittsburgh Business Times:

As cost to treat cancer rises, guidelines lend a helping hand - Pittsburgh Business Times::

"Here’s an example of why guidelines are getting a closer look: Less than five years ago, there was no effective way to treat kidney cancer, Marks said.

In recent years, though, bevacizumab, which is sold as Avastin, delays the progression of kidney cancer twice as long as conventional chemotherapy alone.

The rub: Avastin can cost $100,000 a year, roughly two-thirds more than conventional chemotherapy depending on dose and type of cancer."

Hurricane Carol, 1954


Hurricane Carol produced storm surge of 8 to 13-feet across the Rhode Island, eastern Connecticut, and southeastern Massachusetts coastlines.

Although Carol's storm surge were at least 3 to 5-feet lower than the 38 hurricane, some locations reported record tidal surges. Just as in 1938 - Carol arrived close to the time of high tide.

Observers in Montauk, Long Island reported that the ocean completely crossed the Montauk highway, cutting off the far eastern tip of Long Island for a time. On Shore Road, the main coastal road along the beach in Westerly, Rhode Island, tides up to 13-feet above mean water were estimated.

The water rose to within 1-foot of the record high water line on the Plaque at the Old Market House in Downtown Providence commemorating the Great 1938 Hurricane - 12.9-feet above mean water.

In Connecticut, the storm surge was severe east of the Connecticut River. A tidal measurement of 8-feet above mean tide was recorded at the Groton Railroad Station.

The frightening intensity of Hurricane Carol's storm surge in Rhode Island is captured in this photograph of Westerly, Rhode Island. Buildings in the center of the photo were floated off their foundations, while buildings in the lower portion were swept completely away, only slabs and driveways remain (Photo Rhode Island National Guard 9/54).

Many buildings along the Rhode Island coast lost their roof in Carol's howling winds. This building was located at the eastern end of Misquamicut Beach in Westerly. (Photo Rhode Island National Guard 9/2/54).


Why am I posting about this hurricane?

I could have been one of the casualties.

We lived in Pawcatuck, Connecticut, right on the border with Westerly Rhode Island. In fact, our mail came through the Westerly Post Office. Both towns share the same Chamber of Commerce.

us[4]The red icon on this map was our house, the Pawcatuck River is the dividing line between the two states.

The day this hurricane started roaring towards Misquamicut Beach, my mother said words that would be repeated often in our family "Let's go down and see the waves".

Well, we did go see the waves and they were very impressive, of course.

At some point my parents decided it was time to go but the roads were flooded and our car stalled. I don't remember how long we were stuck but I remember being very afraid.

It was a very narrow road with no room to pass.

Fortunately, a truck driver was driving through and he wanted to get out of the path of the hurricane, so he pushed us to safety. Thank goodness! We'd have washed out to sea like so many of the trailers on the beach did. 4000 beach cottages were destroyed.

Carol010After we got home, the river overflowed its banks by about 8 feet. Fortunately, we lived on a little hill above Route 1 which had turned into a river of its own. Many people could be seen out in rowboats.

When the water finally receded, sandbags could be seen at the doors of all the shops downtown but they hadn't kept out the water. A massive restoration project had to start.

It was very nice to be in the relative safety of our hilltop - finally!

The Edgewood Yacht Club in Rhode Island is submerged by Hurricane Carol's storm surge in 1954. (Photo C. Flagg).


If anyone says to you "Let's go down and see the waves" don't go!

Monday, August 4, 2008


I feel it coming on, again. I'm not sure if this is a cyclical kind of thing, that I'd have it no matter what about now.

I think that the party on Saturday helped to trigger it, though. I never feel comfortable around others, especially people I don't know at all. I never know what to say and I have trouble answering questions. Other adults work, have important jobs. What do I do? I teach piano and have some websites. WooHoo. Practically everyone and her sister has a website now. That can't possibly be a job.

Sometimes my husband tells them about the Cushing's sites. But that's still not "work" surely.

I think all this adds up to me becoming depressed so often. I don't feel like I contribute to society, I don't have an important job, don't travel to exotic locations to be an expert witness, don't produce PowerPoint slides and Excel spreadsheets every day.

My life consists of a little piano teaching, some web stuff...and napping/sleeping. What kind of life is that?

I don't see it getting any better, either - I've been sick for 25 years, over half my life. The only thing that might have helped me (but didn't) was the growth hormone. Now, thanks to the kidney cancer, I can't take that, either.

I'm just taking up space here, killing time, wasting family money.

I sure hope this depression passes quickly this time. I just hate feeling like this so often.

Exhaustion, again

Today, we went out to "our" farm again. We've been members of this CSA (consumer supported agriculture) farm for 13 years now.

It's wonderful! They deliver fresh, in season, no pesticides veggies, various fruits and berries from May through October, once a week. The other days, we can go out anytime we want and pick whatever is available.

I love just going out there, even if I don't feel like picking. It's wonderful to get away, out to "our" farm, and see the animals, and the veggies...very soothing and healing.

farm The first year we belonged, I did a comparison study of several of the local stores, and carefully weighed everything. The farm was a bargain.

In addition to getting all this stuff, we've made some new friends, I've tried some new veggies and herbs - and I think it's important to support the small local farmer like this - and to have a source of food that hasn't been sprayed with chemicals.

Anyway, we went out again today. We haven't been so much since our son went away to college. But just driving out into the country is so refreshing.

For the last several years, I've had trouble getting back from picking stuff. I could hike out to the fields ok and pick but coming back, I'd have to stop and sit by the side of the dirt road, sometimes even lying down. After a while of this, I found that taking an extra Cortef would help. I found that eating a raw green pepper would sometimes help, too. I don't know if it was the heat, the walk, the 'work" of picking or some combo that caused this to happen.

Today seemed better. We went to the peach orchard and picked about 10 pounds of peaches which we took back to the car. My husband wanted to stop by the blackberries - just a little out of our way. I wanted to take the farm wagon out for the blackberries. In addition to the field we knew, there was supposed to be a new one, further away.

So...we got back to the car and put our peaches away. We waited a while for the wagon but my husband got impatient and wanted to walk back to the berries. I gave him the boxes and told him I'd wait on the porch, in a rocking chair, in the shade, thank you.

I finally summoned up some more energy and went out and helped him finish the blackberry picking. On the way home, we were talking about how I seemed to have more energy, that I had made it back after the peaches but I reminded him that it was cooler than it often is and that the peaches were about halfway to the fields where we've usually picked vegetables. So, maybe my energy level isn't really any better.

We got home about 5. And I napped until 9:45. Some improvement - HA!

Sunday, August 3, 2008

Spread The Word! Those Awareness Bands do it again

I was at a party yesterday where I knew no one except my husband. This party was for one of his business partners' mother's birthday. So, there were some people there my husband knew from the office, and lots of family members who had come in from all over to make this a family reunion of sorts.

And, as usual, I didn't know a soul. I am not the best talker even when I do know people, but there I was.

At some point, someone asked me about my bracelets and it was a perfect opportunity to tell her about Cushing's and kidney cancer.

I wear my blue one for Cushing's on my right arm, since my tumor was on the right side. I'm so glad when we started having these bracelets that we decided on the blue with yellow letters. I think if we'd have the yellow, people would just think that they were for Livestrong.

This wasn't the first time this happened. Years ago, I was at an event where I didn't know anyone (that seems to happen a lot) but people saw my Cushing's bracelet and asked about it and I was off. Hmm, maybe I should carry brochures with me!

My husband is running into more and more people with an interest in Cushing's and he does carry brochures with him - at least in his car.

Then, after my kidney cancer I got the green bracelet for my left arm, where my cancer was - guess I'm out of arms for rare diseases!

Wearing these bands is a really good way to spread awareness for these diseases, much better that I would have thought...and it gives me something to talk about at parties!

survive the journey: Cushing's Help is on the (BlogTalk)Radio Network: Got yer ears on?

survive the journey: Cushing's Help is on the (BlogTalk)Radio Network: Got yer ears on?

Thanks, Robin for that great post on your blog!

My comments were:

Yes, of course I'm out here!

I don't remember exactly how these came to be regularly on Thursdays but I think it was because of the long-time regular text chats on Wednesday nights and that I always had handbell rehearsals on Tuesdays.

I remember also that it was nearly a full year before these interviews started that we were talking about how to start a podcast of some kind but not quite sure of how to do that.

I must have been talking podcasting because the Christmas of 2006 my son got me a book on podcasting as a gift. I remember reading it and thinking it was way too complicated. LOL

You made that short podcast on "Diurnal variation in diagnosing Cushing's" in December last year then the first of the year we had our first test podcast where you interviewed me and then we were off...

I remember being terrified at first, and being so well prepared with the person's bio all printed out and advance questions to ask.

Now, when I'm hosting, I pretty much just wing it.

I do think that this is a great way to help spread the word. Last time I looked at the stats, we had over 6,765 on BlogTalk alone. That's nearly a thousand listeners a month. I have no idea how many people listen through the main site or on iTunes.

Personally, I have all these interviews on my iPod so I can listen/re-listen anytime or, if I go to a Cushing's meeting, I can play them for people who may not have a computer.

I think that they're always interesting and I know I learn something new every week. And, amazingly, there's been no dead time where no one could think of anything to say.

One thing I like about these interviews is that listeners can call in with their own questions or comments or, if they wish, they can sit in the chatroom and post what they'd like to say in there and it can be introduced into the conversation.

BTW, I love that broadcasting logo. Can I borrow that sometime? I don't like the one I've been using which is just the ribbon with Cushing's Help Podcast across the top of the ribbon.

Thanks for all your help with these podcasts, Robin. I don't think that they would have gone as far as they have without you hosting/co-hosting and your support. Surprisingly, there is more behind the scenes work that goes on promoting upcoming chats and getting finished ones on iTunes but I think it's all so worthwhile.

So...thanks for all your input, help, knowledge, willingness to talk and just being there. You're a great "Cushie Crusader"!

Friday, August 1, 2008

Advances in diagnosis and follow-up in kidney cancer

Fulltext | PDF (3.32 M)

Advances in diagnosis and follow-up in kidney cancer.

Kidney cancer

Current Opinion in Urology. 18(5):447-454, September 2008.
Rioja, Jorge; de la Rosette, Jean JMCH; Wijkstra, Hessel; Laguna, M Pilar

Purpose of review: To review the most recent data on preoperative diagnostic methods in kidney cancer and in follow-up and monitoring after ablation therapy.

Recent findings: Although the role of the percutaneous biopsy in the diagnostics of renal masses has been limited, new data suggest a high accuracy of the percutaneous core biopsy in the diagnostics of malignancy and a fair to perfect interobserver and intraobserver variability. Accuracy in determining the subtype is also high but lower for Fuhrman grade determination. Data on fine needle aspiration remain controversial. Refinements in cross-sectional imaging might have a value in differentiation of low-fat content angiomyolipoma from renal cell carcinoma.

Contrast cross-sectional imaging remains the reference standard in the assessment of ablation results. Contrast-enhanced ultrasound shows promising results in this field but further confirmation is needed.

Summary: Although few changes are evident in the diagnostic imaging of kidney tumors, percutaneous core biopsy has gained attention and in the light of the current results might play an extended role in the preoperative workup of renal masses. New techniques should be investigated for monitoring after ablation therapies in order to reduce toxicity and costs.

(C) 2008 Lippincott Williams & Wilkins, Inc.;jsessionid=LTGDrph8JWRR78vZLFtKcYnqLlp1VhgDzK1kDxPpx1BJvTmkVXTL!932896411!181195628!8091!-1


In my husband's family, the first person to say "rabbit" on the first day of the new month has good luck for the rest of the month. Various people would call each other in the middle of the night just to be first.

So...I'm saying it to any readers so I'll be the one blessed with the luck.

Apparently, this is a common superstition since there is an entry in Wikipedia: